Dad Went To The Oncologist Today

Over the past few months, my 80-year old dad has been dealing with some health scares, starting with an egg-sized mass in his neck. Several weeks after it was found, he had surgery to remove it on November 30, 2012.  Surgery was considered very successful, as the surgeon was confident that the edges were all well encapsulated, and the mass had been completely removed. But they needed to figure out what had caused this thing. He hadn’t had any symptoms- it was found when he’d gone in for a routine exam to get his thyroid medicine refilled.  He had had two biopsies prior to surgery, and then the pathologist had the entire mass to dissect and tear up, and there was still no definitive answer as to the type of cancer this thing was. They knew it was an extremely low grade cancerous tumor that had actually replaced his thyroid tissue on the right side. They felt very certain that it wasn’t going to have any impact on his lifespan…but they still were not sure exactly what it was.  It had all of the characteristics of a ‘good’ cancer- but that’s about all they knew.

So, he was referred for a PET scan (fancy CT scan) and to an oncologist (who just happens to be the same oncologist I see- and like). I’ve gone to every appointment with dad (until today), since he’s not up on all of the medical terminology.  I’m quite comfortable with medical stuff, being an RN since 1985 and though I have been on disability since 2004, my own medical issues and cancer have kept me somewhat up to date on many things. And, I know how to use the search engines online 😀   I’ve been looking up everything that the docs have said, and I’ve been just as confused as dad.  I wanted to hear what the docs said, since dad calls me with questions, and I wanted to have the info as accurate as possible.  Sometimes dad’s translation of medical terms is a bit iffy !

At the first oncology appointment, the doc was very straightforward. They needed to rule out multiple myeloma. This is a cancer that dad has been terrified of since his mom died of it in a long, dreadful 9-month death back in 1979 at the age of 74.  I remember it fairly well (I was protected from some of the more sordid details- but I was 15 years old, and knew she was very sick), and knew she had been on dialysis 3 times a week during those months, had a horrible ‘quality’ of life, and had coded twice during dialysis.  Back then, they didn’t offer people hospice care like they do now. They went for the maximum treatment, even if they knew it was essentially pointless. Grandma went through hell, and dad remembers that very well.

At that first appointment with the oncologist, dad was told he’d need a bone marrow biopsy, as well as some other lab work.  Dad was offered the choice of doing the bone marrow biopsy then, or scheduling it for another day. I piped up and said he needed to do it then. He did NOT need to spend days worrying about it and imagining the procedure in his head (as he asked me about it, since I’ve had five of them).  The procedure does sound dreadful.  They drill a hole in the back of the pelvic bone to suck out bone marrow.  But, these days it’s much easier than the one I saw during nursing school.  That was the only thing that nearly dropped me to the floor in a dead faint during all of nursing school.  I don’t ‘do’ bone noise. But having them done, I learned that they aren’t that bad. I drove myself to and from three of them (the first two were done when I was in the hospital). So, dad got himself on the exam table, took some deep breaths, and had it done. He did extremely well, however, he didn’t really convince the nurse of his ability to drive home when he answered her with “well, I guess we’ll find out”.  Good one, dad.  We all felt so safe with that answer.

The oncologist also said during that first appointment that his PET scan did not show the usual ‘holes’ in the bones that someone who had multiple myeloma would likely have. And, dad hadn’t had any symptoms. This whole thing was sort of found by accident.  That was all good news. But, the bone marrow biopsy would say one way or another if he had multiple myeloma or any other bone cancer.  SO, after that appointment, there were about two weeks of waiting. He saw his surgeon last week and he felt that the results didn’t show MM- and could possibly be something so rare that he might write an article to be published on dad’s case.  There’s a possibility that this thing actually started as a couple of very slow growing cells transferred to him while he was still in his mother’s womb.  That sort of rare.

Today, I couldn’t go to the follow-up appointment to get the bone marrow biopsy and other lab work results.  I’ve got a nasty cold, and nobody in an oncology office with lousy immune systems needed my germs floating through the air.  Dad promised that he’d call me as soon as he got home, and he did. NO multiple myeloma. No chemo. No chance of that sort of agonizing death (though treatments and chemo are far different now than they were in 1979).  He does have to have some radiation, more as ‘housekeeping’ to be sure that if there are some stray cells they get nuked (the oncologist had mentioned the possibility of this at the first appointment). Dad will have some lines drawn on his neck so they know where to aim the radiation- so it will be visible that something is going on. Until now, I’ve been sworn to secrecy (well, that hasn’t actually been revoked).  But this is good news, and those radiation lines will be visible. People will know ‘something’ is going on.  And here’s the bottom line: dad is going to be OK.  This will not kill him.  🙂

As much as I love Texas and the 17 years I lived there, I’m so thankful to be here now for my dad.  I’m also thankful for the last 10 years that I’ve had to spend time with him. Though face-to-face contact is not as much as I’d like because of my own health issues, we do talk daily, even if he’s on vacation (well, those cruises and other international trips were some blips of time without daily contact, but I didn’t hear that any boats sunk, so I was fairly certain he was safe). When I am able, we do go out and do things together. And he’s always got my back. No matter what, I know that he’s always had my best interests  in mind, and now I want to be there for him to help with medical language translations, and just ‘be’ there.

Time is something that no one can ever get back.  Once it’s gone, that’s it.  I’m trying not to waste what time is left- and that is the kicker- nobody knows when it’s going to be over.  I know that one day he will be gone, and I dread that thought.  I’ve learned during these 10 years back here, as an adult, that he is, and always has been, much wiser than I ever gave him credit for (I think that’s pretty normal- when I moved to Texas, I was 22 years old and still had that post-adolescent ‘all parents are a bit dim’ outlook).  I’ve learned much more about what makes him him, and have so much more respect for him. Being adopted, I could have landed in a lot of places.  I’m SO thankful that I was ‘given’ to the dad I got. While no parent is ever perfect, he did an amazing job as a dad.

I thank God that he is MY dad.  And I’m glad he’s going to be here for a while longer 🙂

To The Young Nurses…

…us ‘old school’ nurses don’t really hate you! At least this one doesn’t!  I miss being around students and new grads.  We’ve all been new, but things are different, and nursing school is VERY different than it used to be.  Back in the day, we didn’t graduate if we didn’t do all of the skills on the basic checklist. We either repeated the class, or got kicked out. Anything else we could do to get experience while we were still in school we volunteered for, whether it was our patient or not. Our instructors were the ones that followed us when we did anything for the first time (the hospital nurse had very little interaction with us – we weren’t her problem), and if it wasn’t up to her standards, she’d follow us until it was. Period.  When I’ve been in the hospital, I’ve had student nurses following my nurse. I was stunned by how little they were allowed to do, and the obvious absence of any instructor. I was willing to be a guinea pig! These hospitals get students from at least 5 nursing schools…and it was all the same, whether ADN or BSN.  The floor nurse not only got a patient assignment, she ended up with students to look after…not really fair. She didn’t sign up to be the substitute instructor.

That being said, I personally liked new nurses (still do, but I’m disabled, so no longer work with y’all).  Correction. I liked new nurses who remembered that they were new. Nursing school teaches you how not to kill someone on purpose- the rest comes with experience.  And that takes time, no matter how many books you read.  ‘Critical thinking’ isn’t something that is taught- it is something that is acquired. The basic skills are what get the job done.  It’s frustrating when schools expect the newbie’s employer to pick up the slack they left by not getting those skills taught.  I understand that not all schools are like that, but a LOT of them are. Much more than even 10 years ago.

I feel for nursing students and new grads. The hospitals have caught on. They don’t want to finish your education that you paid the school you went to to provide. They don’t want to fork over the money to have another nurse at your side for 3-6 months (orientation in 1985 was one week. Period. Can’t cut it? Hit the road).  I hear so many say ‘well, we have so much more technology now’.  Exactly !  We didn’t have machines, and still had to get the job done- so the excuses get old.  If you don’t know, you’ll get a lot more respect if you just say so, and don’t try and pass blame on to someone or something else.  But, in the meantime, you guys don’t get the hospital job you thought you were going to get.  Add in this economy, and you got a raw deal. The school still wants payment, and you get stuck making sandwiches at Subway to pay the rent and student loans.  (Nothing against Subway, but they don’t need nurses).

The whole nursing shortage thing is another problem. In some parts of the country, there is a bona fide shortage. In other parts, it’s more that people are overwhelmed by inadequate preparation, and can’t get the job done with the number of staff that fit into the budget (trust me, there are formulas for figuring out how many nurses the facility can afford and still stay open).  The nurse:patient ratio on an acute neuro floor in a community hospital in Austin, TX  (1986) was 1:14.  That’s right….fourteen fresh neuro patients (strokes, seizures, back surgeries, brain surgeries- after a short time in Neuro ICU, progressive neuromuscular disorders, meningitis, slow viruses, etc…mostly totally dependent patients with a multitude of tubes- PLUS any pediatric patient with a neuro problem since we didn’t have many dedicated pedi floors then) for one nurse on the night shift, and no CNA or ward clerk.  That is being short staffed- but we did it.  It wasn’t uncommon to have ET tubes in place without a vent, or nasotracheal tubes, trachs, feeding tubes, Foleys, IVs, and sometimes rectal tubes on most of the patients. Two or three of the fourteen might be ‘walkie-talkies’… So don’t tell us we had it so much easier, and don’t know how hard you have it when we’ve been working next to you (teaching you the ropes) – and were probably doing the same job before you started kindergarten. We didn’t know lower ratios.  One night it was me (out of school for about a year) and a CNA for 14 patients.  THAT was a bad night. The CNA was a nursing student, and extremely helpful. But she couldn’t chart, give meds, assess changes, or call docs. She was very good at letting me know what the next disaster was, so I could deal with it.  And that was appreciated. Everybody survived, but I was a wreck.

There weren’t IV pumps on anyone with fluids running (or antibiotics) unless they were at enormous risk for fluid overload- we counted drops while looking at the second hand of our watches.  We charted by hand. There weren’t any computers for a long time.  We checked blood sugars with urine dipsticks, and when blood sugar monitors arrived, we shared them with the entire 3rd floor- that included OB/Postpartum and Neuro.  I’m not sure why today’s younger nurses think that patients didn’t get as sick until the last few years. They did 🙂  Sometimes they were in ICU, but if they were still total care with stable vitals, we got them on the floor. Every. Damn. Day.  Total care is hardly a new concept.  Complaining about it has gotten much worse.

But I do sympathize that a lot of newbies haven’t been prepared for what is realistic.  Or how to manage time. Or do basic skills.  That isn’t your fault.  You got ripped off with your $20K/year education (should never pay that much- nobody cares what school you went to…. get an ADN, get a job, and get your employer to help with further tuition- it’s a general benefit in the vast majority of jobs I’ve had- especially if they demand a 4 year degree; not everybody does).  It’s not fair for you guys to get out of school and not have the skills you need.  Maybe that’s what happens when people go to nursing school just to be an instructor, and never really get real experience under their own belts before trying to teach others.  Check out the experience of the instructors you have. IF they haven’t spent at least 10 years doing what they teach, move on.  There is no end of learning once you’re out of school.  But not to have put in the time to really get a good representation of what’s out there cheats everyone.  Especially the patients their students will eventually care for.

Maybe this sounds harsh. Maybe it is. But I see/hear the same thing over and over.  Nursing isn’t a new profession.  Getting into it purely for the money is fairly new.  Yeah, it’s a pretty decent way to keep employed (especially if you’re willing to relocate to areas with real nursing shortages).  The pay isn’t bad.  The hours can be flexible (but newsflash: if you’re new, you get the crap hours).  I liked weekend nights so I always knew my days off, and the brass was at home 😀   With an ADN, I worked the floor, charge, supervisory positions, and administrative jobs for 20 years.  The whole ‘mandatory BSN’ thing was going on when I was in school in 1983.  It’s getting to be more of an issue in some parts of the country, and less so in others.  Where I spent the vast majority of my working years, I was able to work neuro, head injury rehab, med-surg, pediatrics, alcohol and drug rehab, adolescent psych, nursing homes (don’t knock it til you try it- it was my least fav thing in school, but I really enjoyed the old folks!), and MDS/Care Plans in nursing homes.  It was great to be able to move around when I got tired of something- but I never got tired of the interaction with patients.  If you don’t like being a waitress, babysitter, target for bodily fluids, getting beaten up with no recourse, family feud referee, or scapegoat for doctors, switch to something else.  You’re not that special to get out of ‘normal’ nursing tasks.  And, you’ll either survive and get good- or you’ll bail. But taking care of the majority of really neat people is worth it, IF you can deal with the lousy parts.

Nursing is something I really miss. I hate being on the patient end of things, and miss working with students and newbies.  I liked the fresh eyes and ideas.  But those with a superiority thing going on were just annoying.  I’ve had nurses with all of 3 years of experience go after me in a situation where my 15 years of doing the job came in really handy. One question: ‘have you ever felt like this before?’ gave me a lot more information than running around looking for heart monitors when they lady just needed to fart.  She had gas- not angina.  But the new nurse (3 years is still pretty new- it’s not uncommon to feel like a total dunce for 3-5 years- it’s a lot to get figured out) was sure that the woman was going to croak from a heart attack in a matter of seconds.  Uh huh. I told her she was welcome to call the doc herself (I was in charge, so made all MD calls, and assessments before those calls).  She declined. The lady was fine. I did put her on a monitor for a little while, and had it read by ICU nurses, and it was normal sinus.  I recognized that I hadn’t seen every cardiac event in the world- so was assessing her cardiac situation. All t-waves were going the right way. But ego and inexperience could have cost the patient stress, extra tests, and a lot of money.  IF the lady said she had felt that way in the past, just before she had open heart surgery, it would have been a totally different story. Alert the militia and sound the alarms !  But THINK!! Get the information! Do your own assessment. 🙂  And ask for help if you have questions.

When any supervisor would ask me how a new nurse was doing after they started, I had one huge criteria as to how much I trusted the newbie to be OK:  did he/she ask questions?  The quiet ones gave me the creeps, and I followed them like flies on roadkill.  I could deal with someone who asked 30 questions every night. I LIKED them ! I knew how they were thinking, and where their focus was!  I liked when a new nurse asked for help with something- even if they just wanted me to be there because they’d only done something once or twice before.  I was really OK with that.  They knew what they didn’t know, and that’s knowing a lot!  Time management and picking up the bigger picture come along with just doing it.

So if it seems like older nurses don’t like new grads, a lot of times it’s not really true. They don’t like how things have gone downhill with how nurses are educated and turned loose. Getting 75 questions right on boards isn’t impressive (our minimum was 600 out of 1000, over 2 days using a #2 pencil… a typical NCLEX question could involve a 15 year old pregnant girl in renal failure, with a hot appendix).  Yes, many of us need to listen more to what you’re all saying behind the actual comments and questions (i.e.-“I’m scared to death, help!”). We need to be more approachable (that is one of the best things any of my coworker LVNs ever said to me- I never made her feel stupid, so she felt she could ask me anything- we’re still friends).  But please remember, we’ve made it for decades!  We’ve had to go with the flow with all of the changes.  Many of us want to be useful to new nurses.  The whole thing about nurses eating their young is SO old… don’t even go there. It’s because you’re new, and SOME of you don’t know what you don’t know, and have gotten a shoddy education (no matter how expensive it was). You’re more work.  But be open. If you show respect, you’ll get it much more quickly.  🙂

I hope you will love nursing as much as I have. I miss working so much, and still keep my license active. I worked hard for it, and learned a lot by having it.  It gets better !

But You Look OK….

Dysautonomia doesn’t ‘look sick’ when the symptoms aren’t present.  It only looks sick when the symptoms kick in, and that can happen just about any time for me.  My specific triggers are heat, pain, and fatigue.  I can’t leave home without an ice vest (about 5 pounds of ‘synthetic ice’ in four inserts that fit into a vest).  If I get overheated, even with the vest, the chances of my blood pressure and/or heart rate going bonkers is pretty good.

From the outside, it doesn’t look like anything is wrong with me.  But there isn’t any part of my life that isn’t affected.  My activity tolerance, even for basic household chores, is lousy.  I get things done, but it takes a  lot longer than it used to.  No matter where I go, I have to have a contingency plan in the event I start to feel like I’m going to lose consciousness.  I do have some warning, but if I’m away from home, the only thing I want to do is GET home.  I don’t want people around me when symptoms kick in.

Dysautonomia is a disorder of the autonomic nervous system.  It’s the stuff that is either reflex or not within my ability to  consciously  control.  Something goes haywire when I am up for too long, get overheated, or my chronic pain isn’t adequately controlled, and I simply pass out.  My body doesn’t compensate for the low blood pressure properly.  Or, I get a rapid heart rate that sometimes includes abnormal heartbeats and rhythms.

It’s frustrating when people don’t understand that I am not avoiding contact  just for the heck of it.   I would love to be able to do more.  I know my limitations.  I know when I can or can’t do something.   Every single day my ability to do things is affected.  Going anywhere is risky because of the temperature.  It may feel fine to others, but for my body it’s too warm.  Even in the winter I have to wear the ice vest.  When I do my once a month trip to the grocery store I have to wear the ice vest and remove my coat immediately when I get inside.  Usually I go in the middle of the night because there are fewer impatient people, and it’s cooler.

Making a sandwich or emptying the dishwasher is really painful.  I still have to do those things but I also have to rest afterwards.  Laundry is painful.  But it gets done.   I’m not feeling sorry for myself- it’s just the simple truth.  So I am responsible for avoiding things that make it worse, or could trigger completely losing consciousness.  That’s my ‘job’ since I can’t work.  I have to make my life as decent as possible without taking unnecessary risks.  Risks to me are simple things to most people.

I know I look fine.  But please don’t judge me for that when I say I can’t do something.  I’m thankful that I’m not any worse, though the dysautonomia seems to be progressing.  I still have a lot to be thankful for; I still live by myself, and get things done, even if slowly.  For those who haven’t seen what happens, please don’t assume I’m just being weird.

Outward appearance seldom tells the complete story about anybody.

 

Mom’s Final Days…Please Excuse Me While I Bawl My Eyes Out

This is still rough.  And yes, it’s long.

Mom had been through so much, and survived.  She had been through breast cancer, pre-cancerous tumors in the other breast (so bilateral mastectomies when all was said and done), reconstruction, metastasis to her right lung (so part of her lung removed), and then metastasis to her brain (so removal of a right frontal brain tumor, roughly the size of a golf ball). In the mix, she’d also had a hysterectomy, gallbladder removal,  and ankle surgery (she fell and broke it in the bathroom).   There were countless hospitalizations, radiation, chemotherapy, rehab, and progressive decline.

By March 2003, mom had been cancer free for 17 years.  Considering the number of sites  where she’d had it , that’s pretty amazing.  But the radiation for the brain cancer had left her with dementia.  Bottom line- she was goofy. Her memory was horrible.  She could still answer simple questions, and liked going out on rides in the car. She still had some things she enjoyed (if it came in the form of a candy bar, so much the better).  The day before she ended up in the emergency room in Sun City West, AZ, she had been to an art opening and visited with friends.  She may have had no memory of it later that day, but for the moment, she was happy.

Dad called me one afternoon to tell me something was wrong. She just wasn’t  right. Something had ‘dulled’.  I told him she may have had a seizure and to keep an eye on her. If he saw a seizure, dial 911.  I got a call not long after that from him; they were in the ER at Sun City West Hospital.  She’d had a seizure, vomited, and then been out cold when 911 got there.  He sounded scared, and he never sounded scared with all she’d been through before this.  I told him to call me with any updates.  I was near Chicago, so really depending on his reports.  I felt helpless.  I’m an RN.  I want to help ‘fix’ things when family and friends are sick.

He called me  a while later saying that they couldn’t get blood from her to do tests. Huh? This made no sense; they’d gotten an IV in her and had fluids going. Her urine test showed an infection. With the change in her normal behavior and the positive urine test, that told me she was septic. That is basic, BASIC knowledge in the medical field, especially with older patients.  I told him to tell them that they needed to restrain her, and get the blood. They refused to use restraints even briefly- so did an incomplete workup for their convenience.   We exchanged a few more phone calls (me getting more and more angry), and the bottom line was they were sending her HOME with him on oral antibiotics (well, their rental home).  A partially conscious woman with a urinary tract infection bad enough to make her lose consciousness and seize, and she was being sent home.  I was beyond livid.  Dad was terrified.  It took three people to get her into the car (a clue?), and he had to get help from friends on the other end to get her to bed.  Somewhere along the line, they got the antibiotic pills.

I’ll never believe that the ER people did what they needed to do because mom had dementia and was a ‘no-code’ (but she wasn’t actively dying yet; the no-code was not in effect).  And the hospital was full (like they couldn’t move her to another hospital; she NEEDED IV antibiotics and fluids).  The doctor signed off that she was safe to fly later on… that’s nuts, but she’d be out of his hair.  I’ll never know if it would have made a difference.  I just wanted her to have a chance. As it ended up, dad and I have to look at the one positive: she didn’t end up curled up in a nursing home, not knowing anybody or anything.

Over the next few days, dad came up with various ideas on how to get her home. She was taking the crushed pills in applesauce, and when I’d talked to her, she sounded exhausted but was answering the usual basic questions. She was doing better- but not great.  I didn’t know exactly how badly her body was doing, but I knew I supported dad’s plan to get her home.  Except the plan to drive her home.  I had visions of her dying en route, him being arrested for transporting a body, and mom left in the car in some car impound area…. sometimes an imagination is a bad thing.  I made him  promise me NO DRIVING HOME. He promised.  The final option was for her to fly to O’Hare where a friend of dad’s would drive me in with his van so we could let mom lie down in the back while he drove us back home. Dad would then drive on his own, and be back in about three days.  When I talked to her, I was satisfied that she was ‘back’ enough to be near her baseline.

Well, part of that worked out.  Dad got to Sky Harbor Airport in Phoenix, and the folks at American Airlines said she could fly, but only if he was with her.  He left everything but what he was wearing and got on the plane with her.  A few hours later, they were in Chicago.  I was allowed past the security gates to help get her off of the plane. The folks at American Airlines were wonderful. Her wheelchair was waiting (as were a few others- must have been handicapped day for flying), and the flight attendants said “Oh, you must be J”…. Uh, yeah?  Mom  smiled when she saw me, and we got her into her chair, and headed for the van.

When we got to the van, it’s like mom knew she was near home, and partially collapsed. She didn’t have to fight. I was getting nervous that we wouldn’t make it back home to the hospital where her doctor practiced. (why do they call it ‘practice’?  Shouldn’t they ‘know’ at that point?) I’d brought a blanket to use as a sling to ‘arrange her’ in the back of the van- which dad’s friend helped me do while dad put the wheelchair in the way back part of the van.  Dad was muttering about getting her home to bed, and after a good night’s sleep, she’d be fine.  I looked at dad’s friend, and shook my head no.  We weren’t going home. We were going to the ER.  If I had to get out at some toll booth area, and do some psycho dance, we were NOT going home.

Mom moaned most of the way back to our home town. Somewhere along the way, dad knew that we needed to go to the ER (thank God).  We got her there, moved to a stretcher from the parking lot, and thus began the end.  The ER people knew by looking at her that she was going to be admitted, and when they started an IV, they got blood.  Hear that, Sun City West ‘Hospital’???  It was BAD.  She was septic (duh) and her kidneys were failing. She also had a high blood sugar (she wasn’t diabetic and not on steroids).  She did know the name of her doctor when he came in to see her.  Dad and I stepped out into the hall with him and one of his first questions was about resuscitation measures that we wanted.   We’d discussed this before. If it got to this point, comfort was the primary issue.  It was fine to do fluids and antibiotics in this situation since she was in and out of lucidity, and she theoretically could get better…but her kidneys had never looked this cruddy. She was dying. The blood sugar issue wasn’t helping anything. Her white blood count wasn’t good.  We decided to get her admitted, see her through that and then go home to bed since she was relatively stable.

I’ve seen so many people die I’ve lost count.  That sounds rather cold, but as an RN of 18 years at that point, it just wasn’t possible to remember them all.  I knew the signs. I was seeing some of them, but I was still in and out of denial.  I felt OK going home that night though.  Dad and I told the nurses to call us if anything changed; we lived about 5 minutes away. We went home. She was awake, and tired, but looked ‘settled’.

The next morning, mom was getting the last part of her bath when we first got there, so we waited in the hall for a few minutes.  When we went in, she was awake, and recognized us. She was even drinking some nutritional juice-type drink (not the milky based stuff). She’d had a seizure during the night, and got some IV medication for that, but was doing a bit better. The nurses were wonderful about letting me see her lab work, and her white count was down, mostly from being diluted somewhat from the IV fluids. It was still in the septic range, and her kidney function was still in the ‘not-going-to-get-better’ range.  But she looked a bit perkier.  That was nice for the moment.

At lunch, dad’s friend (who did the van driving the day before) had offered to fly to Phoenix, and get the stuff from the rental house. He then offered to drive the car back to the Chicago area.  Wow.  We all went to the hospital cafeteria to talk about the plans.

We got back to mom’s room about an hour after we’d gone to the cafeteria, and there had been a huge change.  She was beginning to mottle, and was groggy. I’d seen that  mottling SO many times, and that is one of the things that people don’t come back from.  It’s when the circulation starts to shut down, and blotchy dark purplish-blue areas are visible.  Hers had reached her knees.  I ‘knew’.  I told dad that if he wanted to tell her anything he needed to get after it; she was dying. He figured she’d be fine (after all, she always got better, right?), but must have sensed something about my reaction. He asked me to step out for a few minutes. I did.   She was quickly going into a coma, and even at that point, I’m not sure how much she was hearing.  But it wasn’t just for her. I wanted HIM to have closure.  Then I took my turn.

During that afternoon, she went deeper into the coma, and I’d let her nearby brother know earlier that if he wanted to come, it was probably better to do so sooner rather than later; he and my aunt and cousin came.  I was also in contact with mom’s other brother, and only sister.  Mom’s mother was on her way back from  the winter in Florida and with the brother in Tennessee.  They were making plans to drive up here (near Grandma’s home also).  Her sister was looking for a flight ASAP.  A very few family friends also came; we didn’t make it broadly known what was going on.

Mom never regained consciousness, and I decided to spend the night at the hospital. She couldn’t tell anybody what was going on, and I wanted to keep track of how hard her breathing was (or wasn’t), and if she showed any signs of pain.  It was a long night. She did start having some respiratory patterns and sounds that indicated she was having a bit of trouble. I asked for some medication to be ordered, and the nurses were great about contacting the doctor (at about 3:00 a.m.) and getting her something. That helped her breathing ease up.

That was the same night Elizabeth Smart was found alive in Utah.  I’ll never forget that. One family was welcoming someone back home, and I was watching someone leave this earth.  I still remember that so clearly. CNN was all over it.  Mom would moan occasionally, so I’d move the chair closer to the bed and hold her hand and talk to her. I also let her know (whatever she could hear and  understand) that dad and I would be OK. If she wanted to keep fighting and come home, that was great!  We wanted her with us- but if she was just so tired of fighting all of the medical stuff she’d had go on over 20+ years, it was OK to stop, and  let go.  I also let her know that whatever had gone on in our relationship, everything was OK.  We were good.  It’s important to let folks know that the living will be OK, and give them ‘permission’ to be free.

She made it through the night, and remained in a coma.  Dad came back up in the morning, and we both stayed during the day.  Another couple of friends came by, but mostly we answered the phone calls, and just talked to each other.  Mom would only respond to discomfort, so we let her be.  I did agree to the air mattress the night before to make her skin less likely to break down- nobody knew how long this was going to go on (though the mottling is not generally something that happens until near the very end).  By that morning, her blood pressure was so low they needed an ultrasound gizmo to check it- so we didn’t bother with that other than once a shift.  The blood sugar wasn’t going to get fixed- so no point in making her wince and groan with each fingerstick and insulin shot; they weren’t doing much good anyway.  Had she shown signs that she was going to get better, I would have agreed to those things. At that point, it was just pain. She had no periods of even being remotely awake, and the mottling was getting darker.  She needed peace and comfort.

Dad’s friend had made it to Phoenix, and found the obituary mom had written for herself many years earlier, and left in her address book. He faxed it to his wife, who brought it to the hospital for us to have handy.  That was a huge help.

I was so torn about what to do that night. I didn’t want her to be alone, and dad wasn’t up for pulling an all-nighter (understandably at age 70).  I needed to get some rest if I was going to work the next night at 7 p.m.  But I really didn’t want her to be alone. The nurses were great, but it’s not the same as having someone next to the bed, watching.  I finally had to make the decision that I’d have to go home that night so I’d be OK to work the following night.  I hated that.  Dad knew I was struggling with that, but we knew that we could both be at her bedside within 10 minutes of getting a call from her nurse.  And we told the nurses to call for anything.  Anything.

Around 8:30 p.m. or so, her breathing got funky.  Like ‘here it comes’ kind of funky, but also somewhat labored, so I asked for the medication for her breathing to be more comfortable.  The nurse gave it, and it did help. Her breathing became less gravelly. (She didn’t have the ‘rattle’; it was different). At about 8:55 p.m., her breathing became sporadic, and I told dad this was the last pattern I usually saw ‘at the end’.  He was still hanging on to the idea that his partner of 46 years was just going through a rough patch and would recover.     I told him no. This was it.  And it was fast. Really fast when it finally happened.

At 9:00 p.m. my mom took her last breath. She was gone.  Dad and I were on either side of the bed, holding her hands. She wasn’t alone. She didn’t have any more pain or confinement to a body and mind that had been ravaged by disease and the effects of radiation.  She was free.  There was a brief moment a couple of seconds after she died when she looked like she had 30 years earlier.  I don’t know if my fatigue was making my vision wacky, or what- but I saw my mom. The one I’d known before anything was medically wrong with her.  She was at peace. I’d like to think that’s when she saw Heaven, and the Lord she loved so much.  She finally got to see the two baby boys that had each died soon after being born, that she’d never seen in life.  She wasn’t held back by anything.

On March 13, 2003, she was healed.

ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.

Could You Just Call And Check On Me In The Morning?

That’s really all I’d gone over to ask my neighbor.  Thank goodness she could tell something was wrong that couldn’t wait until morning.  I had been having a lot of low blood pressure episodes, but this felt very strange, and I was a bit afraid of going to bed and not have someone check to see if I was OK in the morning.  I’m an RN. I’ve lived alone for decades.  I’m glad I knew my neighbor well enough to ask her to call me.  But she could see something was really wrong.  And that’s the last thing I knew until…

…I woke up in the Emergency Room approximately 4 hours later.  Lisa worked late, and got home around 9:00 p.m. , maybe 9:30 p.m. I’d gone over there around the time she got home so I wouldn’t bug her later.  I woke up in the ER and the clock said 1:30 a.m. I’d been unconscious for around four hours.  The dysautonomia was one part of what was going on, I think. Many years later, I realized that a medication interaction was also involved.  Anyway, the first thing I saw off to my right was the doctor counting my medications.  I had a bad habit of adding the last of an old prescription into a bottle I’d recently gotten, to minimize the number of bottles around. They were medications I took routinely, so I knew I’d use them within a short period of time.  The doctor wasn’t amused at my space-saving maneuver as he couldn’t determine if I’d OD’d (no) and on what (nothing).  Once I woke up, he just asked me; I answered him, and he stopped counting.

The next thing I remembered was being told that they needed a urine specimen.  OK, no problem, just let me up and I’ll go pee.  They told me that with my blood pressure being what it was, they weren’t going to let me go anywhere.  That’s the first I’d heard about my blood pressure.  It had taken 4 liters of fluids to get my systolic BP to the upper 70s, and a random 80mm/Hg.  It should have been at least 100 without fluids, and with roughly a gallon of saline, I should have been well into the upper normal range.  It wasn’t happening.  They were sending me to ICU for dopamine if my BP didn’t stay near 80.  If I ‘hovered’ enough at 80, and continued to make sense, they’d hold the dopamine. That’s a resuscitative drug.  I didn’t like the sound of that  whole situation.  But I wasn’t in any condition to argue- they’d stuck a catheter into my bladder (blowing up the balloon on my internal sphincter which HURT-  one should always make sure to push the thing in before blowing up the balloon).  One hose in (IV), and one hose out (Foley).  I was stuck.  I was also more than a bit spooked that I’d  just lost consciousness at my neighbor’s apartment with no warning. I never felt like I was going ‘out’.  I just wasn’t ‘there’ anymore.  I think I kinda know what it feels like to die, until checking into the afterlife (for me that’s Heaven; I’m one of those born-again people).

So, off to ICU for the night.  I was in a bed  in a room with a camera so the nurses’ station could see every move.  Lovely.  Like were was I going?   I kept looking to see what my blood pressure was on the monitor behind me (took some scootching around in the bed), until one of the nurses told me that if I kept watching it, she’d put a towel over the monitor.  Hmmph.  I just wanted to see that I was moving in the right direction. I did not want dopamine.  More plain fluids were running.  I probably should have been thankful for the catheter by the time my kidneys caught up with the volume of IVs pumped into me in a relatively short period of time.  Even though my urine test and blood work showed no abnormal amounts/types of medications in my system, they treated my like an overdose.  Guilty until proven innocent?

My regular doc came by on  morning rounds, and corrected the OD diagnosis.  She knew me well enough to know that ODing wasn’t something I’d be doing. At 41 years old, and not in great health, I was more interested in staying alive.   I didn’t ‘do’ drugs, and had enough medications to take  on a routine basis that I resisted taking prescribed medications that weren’t ‘scheduled’ meds- I didn’t like ‘as needed’ meds at all.  But I didn’t know that two of my medications had been making my life hell, and were likely the cause of my blood pressure dropping to the point of unconsciousness in my neighbor’s living room.  I’d taken the muscle relaxant  Zanaflex for years and had no problems with it (NOT Xanax, the anxiety pill- one physician I saw – once- didn’t know the difference; she now works in the Botox/spa medicine field).  I’d also taken Benadryl as needed for years for allergies.  Well, the two cause really bad hypotension, at least for me.  I had my list of medications and prn OTC meds on a piece of paper in my wallet, and nobody caught it.  I’d been in the ER before for low BP, and all I got was a bunch of nasty attitudes from the nurses, and one doctor in particular. I figured it out later, after changing to a different muscle relaxant because of cost.  All of a sudden, no more severe low blood pressure (I’d actually had mini-strokes from hypotension).  I still had the dysautonomia blood pressure issues- which felt totally different.

Anyway, I got cut loose that morning. I’d been offered another night’s stay in a regular room, but wanted out of there. Had it been a weekend in the Caribbean, I might have reconsidered.  The ICU nurses were actually quite nice.  That ER was known for being nasty and sometimes cruel; I guess the balloon being blown up too soon could have been an accident, but who knows.  I just hope they aren’t that nasty now; I go to a different ER when I need to, which has proven to save my life twice.

I owe my neighbor more than thanks. She literally saved my life.  She also avoided having to have a body removed from her living room (unsightly and deteriorates quickly).  I’ve lost contact with her, as she moved years ago.  I know I thanked her, but I’m not sure I really ‘got’ the extent of what she did at the time.     So thanks, Lisa 🙂

Ending Up On Disability….Part Two

When I got back to my hometown, I was thrilled when I got the job that I actually went to nursing school to do.  I was going to be a full-time pediatric nurse.  I had taken care of kids in various other settings, but never on a pediatric floor.  I’d also be floating to the Neonatal Intensive Care Unit (NICU) and Pediatric Intensive Care Unit (PICU) after orientation.  I couldn’t wait.  The autonomic episodes had been much less frequent in the months before I moved back to the Midwest, and I was very encouraged.  I started that pediatric job absolutely recharged.

I really enjoyed the experience on peds.  I wasn’t prepared for the abuse cases, or some of the really serious limb and congenital deformities, but I was eager to learn.  I wasn’t prepared for the temperature of the hallways on the floor.  The other nurses kept the temp at about 76-78 degrees.  In patient rooms, it was always expected that temperatures varied according to the patient’s comfort.  Hallways were generally kept cooler.  Not with that bunch.  I asked if I could keep the report room cooler so I could  tolerate it, and the vast majority of the nurses agreed.  The night shift was really a nice group of nurses, until….

…one  young, catty nurse (that needed 3-4 tries to pass boards) refused to allow me any space that was tolerable.  I’d already been having more episodes, even at work, and it was a major issue.  I’d been sent to the ER several times during my shifts, which was a burden on everyone I worked with, since they’d have to pick up my patients mid-shift.   I hated that, and was trying to stay well enough to work by having one corner of the floor where I could have the temperatures cooler.  Had I been as vindictive as that one nurse, I could have thrown the Americans With Disabilities Act in her face, and gotten some space that I could tolerate and keep functioning- that was a reasonable request.  There were issues with hours being cut in the summer because of low census, and that became a deal breaker.  I was also becoming terrified of dropping a baby if I began to feel shaky.  I would do all care by keeping the baby in the crib- I’d put my arms around them, but their body never left the mattress.  I never told anybody.   I needed to go.

I got a job at a nursing home, where most (if not all) of the direct care was done by the CNAs. The chances of me dropping anybody were next to nil.   I would help transfer people or reposition them, but I was never primarily responsible for the direct care.  The ambient temperature in the facility was warm, but better.  I went a few weeks without any episodes. And then it happened, towards the end of a shift. My blood pressure sky-rocketed, and then I started passing out.  They were already getting ready to put me in a desk job doing the patient assessments that were similar to the ones I’d done in Texas at a couple of facilities.

I started the desk job, and could keep my office cool enough with a fan to be doable. Then the seasons changed, and the heat was on in the building.  I started having trouble again, as well as considerable pain.  Both of my primary triggers were kicking in, and I started having a lot of the episodes.  Eventually, my boss had to start sending me to the hospital via EMS for liability issues (which I hated). There was also some weird rift between the office staff and the administrative nursing staff (that I was part of), and ‘hiding me’ became a problem.   In  the last six weeks I worked, I was sent to the ER via ambulance about 12 times or so.  I don’t remember any of the rides.  I do remember waking up in the ER often enough that it became common enough not to scare me.  One time I had pyelonephritis and sepsis, which triggered me passing out in my boss’s office- so that’s not technically the dysautonomia.  But the rest of the trips were because I was cyanotic, blotchy, and/or cold and pale- and at best, semi-conscious.  There were times my boss thought I was dead.   My coworkers would either see me starting to fade, hear me fall, or find me- out cold.  It wasn’t going to work.  I had become unemployable.

The seizures were also an issue, as they were more likely to happen when I was in the earliest stages of sleep (regardless of cause), as was discovered on a 5-day video EEG done later on.  It made some things make more sense.  Sleep seizures sound relatively harmless, and since mine are located in my temporal lobe, they aren’t as taxing on the brain- but, I wake up groggy and with headaches that are pretty intense. I’m shot for the day after those.  I also have chewed up inner cheeks and/or the side of my tongue with the seizures.  My coworkers did see seizures, and described them to me; I don’t remember much of what they said.  There was some left-sided shaking, but not the whole body jerking that people see on TV.

Finally, the day came when my boss said I needed to go on disability. April 2004.  She was very nice about it all, though I later became frustrated by corporate ‘legal requirements’ about me returning to work (I think they tried to make it impossible for me to return, and hoped I wouldn’t try). I met the requirements, and tried to return about seven months after leaving.  I didn’t last long- maybe 6-8 weeks.  I couldn’t do it.  I honestly tried during that 6-8 weeks, but I was constantly in agonizing muscle pain, and the temperatures weren’t good. I’d make it through my partial shifts (but go home and fall apart), but then I started full 8-hour shifts. The pain and heat triggers were too intense, and I was off for good.  I was devastated. The last day I was there was actually to pick up my paycheck, when I started having one of the episodes.  I refused to go to the ER even after EMS was called.  My blood pressure was very high (as it sometimes did with the dysautonomia, before dropping). Police drove me home since they wouldn’t let me stay in my own car (it was about 15 degrees below zero wind chill). January 2005- the last time I ever worked as a RN.

My life as I knew it was over.  I felt completely useless, and my coworkers acted like I never existed (as was the M.O. of how we had been instructed to treat former employees at that facility; it was weird). When I was initially off,  I had been told that some of the floor staff were asking about me, and to not talk to them on the phone if they called me at home- at my own home, on my own phone, on my own time.   I saw one former coworker in the grocery store one day, and as soon as she saw that I saw her, she took off, without even acknowledging I was there.  I know she saw me.  All I did was get too sick to work.  Yet I was treated as if I were some enemy of the facility.  It was a nice place, and I liked my job.  But that was weird. Or maybe just ‘Yankees’… I’d been used to people in Texas, where that wasn’t ‘normal’ by a long shot.  At one nursing home, one of the nurses had to take an extended leave because of cancer, and the entire facility collected food for her family for Christmas, and toys for her kids… that’s just how it was done there.

Later I was told I screwed things up on the assessments- I had been doing the same essential  job  I’d done where the corporate consultant called me herself to ask me not to resign.  It didn’t make sense.  All I could think of was the times I’d returned to work at 3:00 a.m. to complete assessments on time, and maybe being so exhausted I made mistakes.  But screwing things up wasn’t something I was known for.  That hurt even worse.   I could deal with the ice cold shoulders- but negative comments about the quality of my work that made no sense to me was really hard.  Integrity is really important to me.  Having that trashed was extremely difficult- and I was never shown proof.  I don’t know how much was actually true, and how much was manufactured, since being told not to talk to anybody. I was still in the early stages of getting on disability from insurance from this employer…I felt  intimidated.  It may have been what was told to the other staff to explain why I was gone… I’ll never know. And I wouldn’t trust anything they told me now anyway.  I wonder why the two other people I saw ‘removed’ actually left.

Not being employable was (and still is) extremely hard.  My identity as a nurse is essentially gone. I have had more physical problems since going on disability.  I had a knee replaced, tore the other ACL and meniscus but couldn’t get them fixed because of other medical problems, had  multiple pulmonary emboli (acute, subacute, and chronic in all lobes of my right lung), heart catheterization, 4 years of Coumadin,  leukemia, worsening diabetes with multiple insulin shots/day, major issues with medication interactions, horrendous things happened repeatedly at one ER , etc. My pain level has gotten worse, and the headaches now are bad enough that narcotics are ineffective after an hour or so- so I live with them.

I have to wear a vest with 4 ice inserts year round if I go out to the store, or to someone’s home for as little as 15 minutes.  I can’t walk without some sort of support except for the short distances in my apartment.  If I don’t have something in my monthly budget ahead of time, it isn’t possible.  There were no friends to have dinner with, and no place I can go without my ice vest (and I’m thankful I’ve got that, or I wouldn’t be able to spend any time at all with family at Christmas; I can’t eat hot food in a hot room even with the ice vest- but being able to visit with them after dinner is a blessing). I do have a childhood friend with whom I’ve reconnected, and we’re hoping to get together soon. With the ice vest.

What can YOU learn from this?

Always get short term  and longterm disability insurance whenever you can.  If you don’t have it, and end up needing it,  you can plan on having to move in with whatever relative you have, and being poor for the rest of your life, but not poor enough to qualify for any extra assistance from anyone, anywhere. Be very thankful if it just becomes wasted money- but if you need it, it’s the difference between about %40 more income. Think of it as rent being covered.  You may never get sick….but you never know when a drunk driver is out there.

-Don’t forget people who get sick and have to leave.  Their world has been completely altered forever.  Even a five minute phone call means a lot.  Just being remembered at all is huge.

-Keep documents of health related issues.  If nothing else, it saves time if you have to see a new doctor.  If you need information for any sort of disability, you’ll have it (even if  just dates and providers)  to fill out the Social Security, and LTD forms.  I had over 1000 pages of hospital and physician documentation, and was passed on the first application.  I’d have 3-4 times that amount now.

Don’t assume you will never become disabled.  I certainly never expected it when I started out as a nurse, and even when I was initially diagnosed with epilepsy, and later the dysautonomia. I thought I could fight through whatever happened…eventually a body gives out.  Nobody knows when, who, or why.  Be prepared as much as you can be.