Nursing Home

I just spoke to my friend Ted, who’s in a nursing home due to the same NF problems I have, only more advanced.  Tons of pain, unable to do anything by himself (this was six months ago) etc.  Well, he wasn’t feeling well one day and went to the ER because he knew something was wrong.  He had a fight with the ER staff because they weren’t listening to him explain the problem he was having.  He insisted on a CAT scan and they found his appendix was ruptured.  Now he’s in a nursing home because he can no longer take care of himself. It is a nightmare, to say the least.  He told me to do everything in my power to make sure that doesn’t happen to me.

Ted has had dozens of surgeries.  Unlike me, he has rods in his back.   Like me, his pain receptors are full and nothing helps with the pain in any way to make a difference.  And now he is in a newer nursing home, which is the only plus because they keep it clean, but there are TWO nurses for 22 patients (his section) day in and out.  The noise level is through the roof from dawn until 10 p.m., the bed is so bad the staff must turn him during the night because of sores on his backside, the sheets are so thin you can watch television through them and the food?   This is a grown man who weighed all of 140 when he got there; now he weighs 120.  Once in a while, his ex-wife (who he’s close to now) or a friend will come by with some edible treats, but he doesn’t have much of an appetite anyway.  Mostly, he’s sorry he didn’t exit himself before it came to this.   Mostly, he encourages me to go that route if I was getting close.  How would I know?  He didn’t.  It was the last surgery that did him in.  The one he wasn’t expecting.  Mostly, he wants to die as soon as possible.

Well, who in the right mind tells themselves that’s where they want to die.  He said his biggest regret and fear is that that’s where his life will end.  He eats alone every single meal because everyone there is in their 80’s and they are either being fed, drooling or making horrible noises.  He did start to eat with everyone on Thanksgiving, when he looked up and saw his ex standing there, smiling. She had told him in the morning she was having Thanksgiving with friends, but surprised him.  She is having surgery next week and won’t be around for a few months.

As difficult as it is for me, and it is difficult, I must try and not go to the abyss, my favorite hangout.  I must try to hold on to what I do have, not what I don’t, or what I think I want, or need.  Because in the end, none of us knows the real answers to those questions.  Mostly, we don’t even know the questions.

This seemed like a better place for this John Prine song, rather than under "Caregivers"

The Abyss

Fredrick Natchez wrote (among other things) that if you stare into the abyss, the abyss stares back into you.  It’s true, at least for me.   I feel everything closing in around me when the pain reaches the heights it has been reaching.  Maybe I’m just freaked out about my upcoming appointment 45 minutes from home on Tuesday.  I really am scared about it.  Haven’t been in the car that long since my brother brought me back from the hospital in September.  

And when I start walking around the periphery of the abyss, the panic attacks come racing in, ready to give me a one, two punch.   And panic makes the pain worse.  Yesterday, not even lying flat was helping 

Wednesday, I had to dump Oliver's litter because he wouldn't use the box and that usually means something is wrong in there.  Pam was gone, and it was a lot of work.  I had other litter, thankfully, but now I need more.  All that work is probably why the pain is so bad.  At least I got to cancel his appointment with the vet; he's using the box now.

My brother came by just now with a food care plate from the Thanksgiving dinner I missed.   My sister is a phenomenal cook AND baker; the turkey was wonderful, the mash potatoes and the asparagus, all great.  But the pecan and cherry pie slices were incredible…only had a small bite of each, as I want to save them for tomorrow.  If I felt well, I of course would have been there, but feeling the way I do, I can’t say I missed it.  And therein lies the rub, eh?   I miss most of life because I’m in pain, but if I was well, what would I be doing right now?  And what am I supposed to be doing in the condition I am in?  Just  being?  To be?  I’m a verb, great.

Seriously, my dad is 88 and in tons of pain, but he still gets around and has no help except a cleaning woman twice a month.  And he’s friends with a bunch of people who have major health challenges.  They go to movies, out to eat….you know, doing life.  What’s wrong with me?  Yes, I’m in agony much of the time.  This new regiment isn’t the be all end all.  And family just doesn’t understand….my brother said he “thought the new program was working”  Well, it is if you want to call lying flat on your back all day but not in pain for two days each week working.  Yes, I go out for an hour or two each week, with my helper.  She offers to go without me, but I need to put it on my debit card.  Eventually, I’ll have to keep a bunch of cash on hand because I won’t be able to do it anymore.  I’m scared to death.  Well, I’d like it to be to death, but apparently, that’s not the plan.

I’m beginning to think we are date stamped at birth and we have to keep going until we expire.  So be it.  Fair, it ain’t.  But so be it.  Sorry, very bad day.  I was going to post this yesterday, the day I wrote it….but it was Thanksgiving and I was trying to be thankful for what I DO have.  I think of something to be thankful for every day, but when the pain is a 10, it’s hard

Sorry this reads so scattered.

Buzzing Bees

Happy Thanksgiving!  It’s patch day, always my worst day so it’s good I’m staying home.  As I write this, my feet are numb with pain.  Sometimes I sit up a little too much when I’m reading and suddenly my feet feel like there are hundreds of buzzing bees  inside of them and numbing up to boot.  I am going in to see the pain doc on Tuesday, the first time since my hospitalization in September.  I hate the thought of going all the way out there, the way I am feeling.  Pam is taking me and I’m a bit worried about that, because I’m not going to be in good shape and I don’t want to be giving directions, but I’ll have to, since she doesn’t know how to get there.  I really should just take a taxi.  I may change my mind.  She needs the hours, but I need to lay as flat as I can and it’s easier in the back of a taxi.

I just got an email from a woman whose daughter has the same challenges as I do; only she’s in her early twenties.  I first heard about her when she was very young.  Her mom posted on the NF forum site.  But I stopped visiting that site because it scared and depressed me.  However, we caught up and now she has a Caringbridge site, which is how I keep up with what is happening with her.  As bad as it is for me, and it IS pretty bad most of the time, when I hear about young people having pain issues as bad as mine it makes me so sad, so angry.

That’s when I start to question the existence of G-d.  Why would a loving G-d do that to us?  The answer is He wouldn’t.  Not the way we describe Him.  We always have an answer for that one.  We’re being tested, it’s not G-d but the devil, we did something in another life and it’s coming back to bite us.  It’s endless.  And despair is unacceptable because it flies in the face of the faithful, or the people who think they are.  But faith isn’t about books, whether it’s the Bible, the Torah, the Quran….it’s all the same.  Every single war has been, in the end, about religion.  And religion is NOT the same as faith.  Not by a longshot.

Anyway, this Thanksgiving be sure to give thanks (do it every day….really) for your health if it’s good and never for a moment take it for granted.  Just like everything else in life, it’s fleeting and could turn like that (fingers snapping). But do take advantage of legs that can walk, run and jump, arms that can lift and hug, toes that can wiggle, fingers that can write, and point, eyes that can see, ears that can hear and all the rest of it.  Use it.  Enjoy it.  If you believe in G-d, give thanks for it.  Pray, if you want, to always have it, but try not to feel cheated if you lose it.  And remember your prayers are probably answered.  They just aren’t always the answers you wanted.                     

Focus

Keeping myself positive and focused (on anything other than the pain, isolation, etc.) is always a challenge this time of year.  It’s the darkness; opening the drapes at 7:30 and closing them by four is depressing, let’s face it.  But I keep myself as busy as possible, reading, watching Netflix, writing, etc.  I am still on a self-imposed news blackout because I am still get very depressed and the pain sky rockets whenever I stick my toes in the water of what is laughingly called “the news” these days.    It used to be just a couple of networks that did more editorializing than reporting….now they all do it.  Today, Pam told me about the end of Hostess snacks.  Can’t say I’m sorry to bid them goodbye, but I am aggrieved about the loss of jobs.  And I admit, I use to have a Hostess cupcake every once in a while…rare and, but a treat.  Oh well.

My brother and his wife, Fran, came over Saturday night and took me out for dinner.  I was having an okay day, and I drugged up a bit too well; they each had to take an arm, as I kept stumbling.  And I almost fell going into the restaurant.  A couple people saw me and probably thought I was drunk.  Well, it was drugs, but I wasn’t about to stop and explain about my tumors.  It was great.  I so miss interaction with people.  Yes, I have someone come over a few days a week now, but it isn’t the same as a close friend or family member.  I’m not going anywhere for Thanksgiving….too long a drive, even if someone picks me up, and I’ll just go lay down when I get there, so why bother?  So seeing family this close to the holiday helped me a lot.

I’ll tell you, one of the biggest challenges in all this, besides the isolation, pain and forgetting one’s social skills, is the temptation of stopping to explain to total strangers why I need a handicapped space (when the symptoms aren’t obvious) or when I’m stumbling around like a drug addict (well, you know).  Hard stuff.

I wonder what makes me keep fighting.  When Oliver passes, assuming he does so before me (as hard as it will be, it will be easier for me, I think.  He won’t know where I went.  Of course, I don’t know where I’m going either (lol).

Speaking of Oliver, he is not well again.  He’s not evacuating the way he should be doing and I’m afraid it might be a urinary infection, even though it’s his bowels that have stopped.  I even gave him some lactulose (I used to give it to him several times a week, years ago) twice today and no effect.  He sees the vet tomorrow….and I leave the carrier out the day before so he isn’t freaked when he sees it, and he actually crawled in there and just stayed for a while.  That freaked me out.  He’s telling me he needs to go see the vet.  I know that sounds nuts, but trust me, he HATES that thing.

Today, this song has been going through my head.  Maybe because I just watched that FABULOUS Cole Porter movie, “De-Lovely” but I honestly can’t remember hearing that one….he wrote over a thousand songs in his lifetime.   Talk about contributing to the joy in the world.  I know there is lots of great music out there right now, but those songs?  The Cole Porters, Irving Berlins and all the jazz greats are gone but not forgotten.  I know Oliver is a cat; but he and I have an unconditional love for each other and have had from the first time I laid eyes on his sleek, grey tabby coat and beautiful green eyes, and he laid eyes on my bowl of food.  Love.

Methadone Withdrawal

Thought I’d share some information about methadone and the withdrawal that I am still experiencing, six weeks after I took my last small dose. 

It hangs around in the body for a very long time, depending on how much you were taking and for how long. I know that for those of us in pain, it’s a necessary evil when other things don’t work.  And it did work for me for a long time….too long.  Twelve years at 60 mg a day.  Initially, it was 100 but I do other things like reiki and acupuncture, massage and whatever else works but doesn’t harm the body.   So in doing those other things, I got it down to 60, which is still high (unless you are nuts enough to do it “recreationally”   Never understood that.  It’s about as fun as being run over by a train).

Anyway, I thought I was done with the withdrawal thing, but this was a stressful week and I had insomnia, flu-like symptoms, the chills; all withdrawal symptoms.  I just saw my healer who does acupuncture, these incredible essential oils that help with various things (like constipation, pain) and she told me that it could indeed be hanging out in my body.   She said the remains of it find a place to hang out once you stop taking it, and eventually, your body expells it, which is why you get the withdrawal symptoms months after you stop using it.  She said that I am much better in terms of my flexibility and her ability to work on me and get results, but I may still have a “methadone day” for months to come.  Not nearly as horrible as it was at first, and because I still use opiates for pain, not as bad as it would be.

I think the movies always make it look like it’s horrible for a short time and then it’s gone and you’re fine.  Not even close.  BUT, there is relief, there is hope and you will get it out of your system if that is what you want to do.  However, if you are trying to find something to help with your pain due to NF tumors, talk to your doctor about the fentanyl patch with morphine as the break through med.  I’m off the diladid too, and morphine uses less opiate than the diladid so they were worried it wasn’t going to work.  But pain receptors work differently for different people.

I know this is a never ending battle and it could not work at all at some point.  As it is, it only works if I lay flat all day, every day….very difficult emotionally.  I can get out for short periods to pick a few things up at the store, and I did actually have two meals out over the past three weeks, which was a huge deal for me because sitting is torture.

I have no plans for Thanksgiving.  Too hard to get to my sister’s and what’s the point?  I’d be flat on my back the whole time after the 45 minute drive out there….don’t want anyone to pick me up then turn around to take me home.

The Annas

Am having a bad day today pain wise…last night I actually had dinner OUT with a friend!  The second time I went out for a meal in two weeks.  I hadn’t done it at all since long before my hospital stay and change in meds, so it was refreshing.  I give thanks for that, with all my heart.  I am a strong believer in acknowledging the good, especially when I’m such an expert at acknowledging the not so good.

But I’m paying for it today.  Pam was here, and then her supervisor was here to do an assessment of her work.  She does that every six months, I guess.  It went fine; I told her about the key thing and said everyone makes mistakes, and although it was a scary one, when I weigh the pros and cons of having her with me, the positive far outweighs the negative.

In the meantime it seems like no species can get along with one another.  Remember the hummingbird feeder I got a little while ago?  Well, in the winter, in Washington State, only one kind of hummingbird hangs around through the cold.  The Anna.  At least that’s what I read on the internet.  But don’t quote me, I’m hardly an expert.

So I’m laying here, reading and watching the hummingbird feeder for action, and I could have sworn I saw more than one.  But I only see them one at a time.  When they do arrive at the same time, it’s like crashing fighter jets.  They chase, they dive, they ram each other.  Very exciting.  I should be a bookie.  Trouble is, I’d need a camera with a stop action feature.

I should name one “HummingCon” and the other “HummingLib” when they “Come together like a couple of taxi’s on Fifth avenue” (that was a line from “Rear Window” when Thelma Ritter’s character, Stella, was trying to explain to Jimmy Stewart’s character, Mr. Jefferies, what love should be like.

Yeah, right.  Well, whether these guys come together like a couple of taxis or a couple of fighter pilots, it looks like it hurts.  Can’t wait for spring, when I’ll get different species with pretty colors!

Caregivers

I wish I had a crystal ball to tell me why and when my pain levels shift so much.  Thursday, it was like there was nothing wrong with me at all…that feeling lasted about five hours and I thanked G-d for every second of it, believe me.  I don’t just pray for help, whether it’s for me or someone else.  I make sure to give thanks for it if my prayer is answered the way I want (and if not, keep in mind my prayers ARE always answered, just not always the answer I was shooting for).

Today was a day from Hell.  Nothing was keeping it at bay; and I had a couple things to do that required I go out…without help.  I did it, but it wasn’t easy.  And it was patch day today, so hopefully tomorrow will be better.  The day following patch day is usually the best but the weeks preceding the election were a nightmare.  Don’t get me started. 

So, I think I need to keep in mind that what goes on in my body is a reflection of what is going on in my mind.  Our bodies are receptacles of our emotions, and holding on to anger, frustration, fear, etc…..all the “negative” feelings; makes things so much worse.  You don’t have to have a tumor disorder to know that, right?

My helper made a very scary error the other day.  I want to take partial responsibility, but then again, I have her because there are certain things I can no longer do, AND, I get foggy from the drugs.  We were going out to do errands (my good day) and we stopped to get my mail.  Two hours later, on the way home, we passed the mail boxes and I noticed my mail door was opened and my keys were dangling from the lock.  I yelled for her to stop, and got out to retrieve them.  She was ashen.  She also had been driving kind of loopy.  I took a deep breath and just said “Well, we could dwell on what could have happened, but nothing did, so let’s just drop it for now” But I also said how disastrous it could have been; my box identified who I was, and my house key was on it.  And all my drugs are in the house.  Disaster with a capital “D”.

She immediately told me I had every right to fire her on the spot.  I said lets’ just take a breath.  I did acknowledge it was a bad error, and that I really, really needed her to pay attention.  She gets side tracked easily.  But she has had a very hard life.  People don’t do this job unless they have to.  I mean, there are probably some care givers who enjoy it, but there isn’t much to enjoy.  The woman is a cleaning machine.  My home was never filthy, but it was messy sometimes.  I guess I didn’t see the down deep dirt until she showed up.  It sparkles.

And I needed to take a couple days to balance things in my mind.  I also needed to ask her if she was planning on telling her supervisor, who happens to be coming on Monday to talk to me about her and how I am getting on with her.  She is supposed to do it every once in a while so it’s no big thing.  And I’m a client, but I’m her boss and get to choose which company I want to work with, as long as they contract with DSHS.   I can also have a person of my own choosing who works independently with DSHS.  That I’m not so thrilled about, because if they can’t make it, there is no one to replace them on that day, whereas with the service I use now, takes care of that (if they can, but they usually do)

I talked with my dad about it; he’s always wise about this stuff.  At first, he thought I should find someone else.  But when I called him back, I told him I thought about it and realized I’ll be trading one problem for another because no one is perfect and this is a tough job.  For the most part, I really like this woman and she has been so good to me, and I to her.  She’s so willing to jump in there and do whatever.  She brings me little treats….like flowers from her garden, chocolate, smoked fish that her son makes….and I give her the dark meat from my roasted chicken because I don’t like it, and other food items I decide not to eat….all of it good and not past the due date...

So what if I have to repeat myself sometimes.

And remind her where to turn to get me where I need to go, even if we’ve done it a few times.

And find things that don’t belong where I found them (like a sponge in the dish cupboard)

The key thing was bad….but I know it won’t happen again.  If it does, my decision may be different.  But the last thing I want to do with her is put her on
“probation” She’s nervous enough.  And I am NOT a task master.

I just hope and pray I stay cogent until the end.  And have all the people I love still in my life.

Blessings

No Difference

The pain has been non-stop.  My new protocol works for a day or two, then doesn’t work anymore.  And yesterday I could find nothing to distract myself from what I assumed was a nail biting election.  I was on news blackout because it just increases my pain when I’m stressed.  My phone didn’t ring all day so I convinced myself it was bad news for Obama.  My dad finally called about 6 (PST) and said we’d probably not know until tomorrow.  Then he called a few hours later to tell me to sleep well.  I did.

My dad has been a lifelong Democrat and champion of the civil rights movement.  I recall when I was about six years old, during the Kennedy election, we had a sticker on our front door with a black house and a white house next to each other, representing integration.  We had a black family over for dinner as part of some exchange program.  I remember thinking, “Why are these strangers here?”  Not that they were black, but that we didn’t know them.  Our neighbors were very ticked off at my dad but he stood his ground, bless his heart...  He had an upstart business and it was difficult for many years, but he never wavered from his beliefs.  Still hasn't.

He feels that way about everyone.   I remember telling someone that my dad and I saw Brokeback Mountain together when he was visiting me from Minnesota.  Most asked how old he was.  He was 84 at the time.  Everyone was knocked over when I said we had long talks about the movie and how awful it must have been for the characters, and for the  people living in a lie because of fear.  No one could believe a guy his age felt that way who was straight.  We had a lot of knock down fights when I was growing up, but never over those issues.  He is a strong supporter of gay marriage and legalizing marijuana.  He knows of my challenges of course, and knows I smoke it for pain and did so recreationally when I was younger.  Of course, when I was 17, he didn’t know.

Once, when my folks were gone for the day, a friend came over and we made loaded brownies for a party.  They were cooling on the table when my dad came home.  He asked for a piece.  I said no, dad, they are for a party.  He said one piece?  You won’t give your old man one piece?  I felt awful, but couldn’t believe he didn’t notice they were more green then dark brown.  If he had known, it would have been WW III.   Can’t say he was open minded about me taking drugs.

I just hope the next four years brings what Obama promised in the first four.  I get that he inherited a huge mess (Clinton left Bush with a trillion dollar surplus and peace...Bush, on the other hand, left Obama with a trillion dollar deficit and a war)  and had almost no support from either side of the isle….I hope that changes, because until people stop digging their heels in, until we stop trying to buy elections, until we CAN have an election where gazillionares aren’t throwing billions at the candidate, until they are no longer rigged one way or another….until all that happens, we are going to continue circling the drain…and eventually, we will go down just like every other country we profess to hate.  We fight wars to “bring democracy” to the “poor souls” who live under dictatorship….with people like Bush at the helm.   But the big difference between “us” and “them”?   Nothing.  Not one single thing.  Not when we behave the way we have been behaving.  To each other, and to the world.

Sandy

I am having profoundly conflicting feelings about the super storm, Sandy.  Anger at the news coverage, which makes an awful situation worse by further dramatizing everything (as if it isn't bad enough). Anger at the helplessness I feel due in part to my physical challenges.  Anger at our 20/20 hindsight.   And heaven help me, angry at some of the victims who by right, should feel frustrated beyond measure, but who, due to fear of the unknown, are not approaching this with more patience.  It has been less than a week, and one woman looked like she would have an aneurysm because she thought she was going to die from the elements.  And some have died, so her feelings are not without merit though she was making it worse for herself.  I'm an expert at doing that, so I know it when I see it

Then I think about the huge number of people who live in the elements without food, without water and certainly without electricity the whole of their lives.  They are used to it, it’s true.  But our dependency on a crumbling infrastructure is horrifically frightening.   Global warming (yes, Virginia, there is global warming) coupled with the natural changing planet, will bring more and more of these events, closer together.  In the early part of last century and up until the late half of it, when a natural disaster hit somewhere on the planet, millions of people sent millions in relief, as well as volunteers from every part of the globe.  There are now too many fires to put out, and they are coming too fast.

And so starts the blame game.  We have a general election next week, and given the impatience of the people suffering, they will most likely blame those in office and vote accordingly.  As was true with his first four years in office, Obama could not fix what took Bush eight years to destroy.   Clinton left Bush with a trillion dollar surplus, and eight years later, it was a trillion dollar deficit.  Which Obama inherited.  Lord love a duck, he could not turn it around in four years.  Duh.  With almost zero support from either side of the isle (conservative democrats), he is getting far less support than he deserves.  Is he a great leader?  No, I don’t think so.  He isn’t as strong as I thought he’d be.  But then again….no support.   I just don’t want to see the emotions of democrats boil over on Election Day, blaming Obama for a blameless situation.  They can only fix things as fast as they can fix them.

Listen, I grew up in Minnesota where yearly, blizzards would stop the world from going around for days at a time.  Sometimes, without power.  I live in Seattle now, and 1 inch of snow use to make me laugh because everything shut down.  I don’t laugh anymore.  I live on a hill and can’t get down when there is ice and snow.  I remember my first year here, and I had the radio on while I was dressing one morning and heard this list of school closings.  I thought I had a radio station   back home.  I peered out the window and saw nothing.  Not even a heavy dew.  It’s all relative.  Well, not all.

That storm is beyond my imagination.  I think about my meds and what I’d do when the big one hits (earthquake, flood?).  And I’m sure millions of those people ARE in my situation.  G-d bless you, each and every one, sick or well.