Heavy Heart

I just called my friend Ted to wish him a Happy Easter.  And I wish all of you who celebrate Easter to also have a happy one.  Ted has the gentlest heart, the sweetest soul and the most patient nature of anyone I know, let alone someone faced with what he faces.  He takes so much pain medication he said he’s in a stupor most of the time.  I can’t even list it all.  When he needs to fight with DSHS or another government agency, he actually skips a dose or two and deals with the agony just so he can think clearly.  His voice isn’t as strong as it once was, but his pain has lessened, thank G-d.  However, they have told him in no uncertain terms that he is now too high risk for any surgery, so they will not operate on him even in an emergency.  Which is fine by him.  He’s wanted to check out for as long as I’ve known him.

This is where I have to yank myself back to myself, and not freak out at the prospect of ending up in the same situation (not that my situation is a walk in the park….if I had seen this coming, I would have checked out long ago).  I tell myself there are hundreds of challenges others have and that doesn’t mean I’ll have the same ones down the road, why should it be different with Ted?  Well, probably because I’ve been about six months behind him in terms of the progression.  Until recently.  I’m in agony, yes, but I still get out on occasion.  I have a walker, yes, but there are many times I don’t need it.   I just had a mammogram Friday and I tell myself, why bother?  Yes, I had breast cancer in 2005; but that was eight years ago, when I had a lot of fight left in me.  I don’t think I’ll bother with them anymore. I would not treat anyway.  I would like to know, but really, considering what I’ve been through, I’m done fighting the big fights.  I’ll keep fighting the daily ones until I can’t any longer, but that’s it.

I’m watching the hummingbirds drink from the feeder.   The sky is blue, the sun is shining, and my wind chimes are sparkling in the light.  Pam bought me a beautiful plant of daffodils that is sitting on my deck.  I’m lying on the couch, writing and appreciating it all.  Today is not a day for asking “why?”   That question is only posed when difficult situations arise.  When we are happy and things seem to be moving along just fine, thank you, we don’t ask.  Ever notice that?  No one says “Why is it so beautiful today?”  “Why have I done so well lately?”  Maybe we should practice doing that. 

There is this proverb (can’t remember where it originated from) that goes,“May you have an easy life” and people sometimes make a toast over it, thinking it’s a good thing.  It’s not.  We don’t learn from easy.  We don’t grow.  We NEED challenges to become better people.  Huh.  Judging from my recent challenges, I guess I still have a lot of growing to do!   DSHS approved me again for Pam, and then I get a letter (on a Friday before a holiday) that reads I haven’t sent back the right paperwork (my caseworker took it in for me and yes, it was approved) and I would be cut off on April 4 if I don’t get it back to them.  Idiots.  I called my caseworker and she said “don’t worry about it” to which I replied, “Well, someone there thinks I haven’t done it….find out who and let them know I’ve been approved”   Our tax dollars hard at work.

Disguises

Gifts are often disguised as challenges, they say, and unwrapping them is a challenge in itself.  Especially when the challenges are like those Russian dolls or Chinese boxes, one inside another and another and another.  Yet, that is life whether like it or not.  The opposite of the dolls and the boxes is the onion.  Peeling away at it, layer by thin layer, exposing more and more of what’s inside of us.  The pain, the joy, love, hate, misery, happiness…the whole shebang we call life.  Who can say they have the most challenges?  One person seems to win the genetic lottery and have it “all” while someone else gets the genetic mutations that make the winners life look all that more perfect.  But that is seeing the world through smudgy, cracked glasses, while the winner may be stuck with seeing the world through rosy ones.  Either way, they give you the wrong picture.

Why is it so damn hard to understand that?  Why do we want things that we know are impermanent and why do we expect certain things not to be impermanent when really, everything is impermanent.  Whew.  There is only now, right?  That is all that matters.  And yet. 

And yet when my pain is through the ceiling, when I am constantly missing family events, friends events, taking walks, going to movies, working, laughing, going out, staying in…having a life…I forget all of the above.  I forget that I can still make the most out of what I have.  I still have that power.  It’s a choice.  I chose to complain and feel sorry for myself because it keeps getting worse and damn it, I have a right to be mad and feel lousy and complain and drive people away!  Now there’s flawed logic if ever there was flawed logic and all you have to do is read the news to know it’s all over the place.  Mostly in politics.  But I digress.

Having the right to feel lousy seems to me a little whacked.  We all know that yelling at the stars does not make them move, it only gives us a sore throat.  I mean, the release is nice so yes, sometimes I do cry and scream at my situation.  But if I did it all the time?  It would be even worse, which sometimes is hard to imagine.  Yet sometimes, when that’s exactly what I’m doing and I realize it enough to stop, the pain subsides a bit.  Hmmmmm.  What do we have here?  And insight?  Yeah, the same old shop worn insight I have every couple of weeks when I slip back to the abyss and welcome the darkness, my tears drowning nothing.

Today should be a “good” day because I put a new patch on yesterday.  I mean technically, there should be no difference between days and I must admit, there seems to be no rhyme or reason to the levels of pain.  I think I need to email G-d on that one.  I wonder what the address is?

"Impermanent Things" by Peter HImmelman

My Father

My dad phoned me Sunday with some excellent news!   He’s moving to Seattle!  I am so happy and excited.   I worry about him so much and it will be great to have him closer to us all.  I know everyone worries about me because to them I live the back of beyond…a 45 minute drive which I can’t make anymore.  One step at a time.  The thing is, even if I wanted to move closer to them (which I don’t because my acupuncturist, my therapist, my dentist, my friends….you know,  my life) I’d have to re-apply for the help I get because it would be a different county, and it’s a horrible process.  I just re-applied three weeks ago because you have to do it every year.  So, we shall see.

And, two of my nieces and my nephew just left!   I can’t go to the Seder, so the kids came to me….armed with my brother and sister in law’s soup, salad and cranberry crunch, and my sister’s matzo rocca.  If you’ve never had that, you are missing out on a big treat.  And this is the third Passover I’ve missed and haven’t made my matzo ball soup to bring.  Oh well.  Can’t do anything about that.  Catching up with all of them (except Samantha, who had school….AND, she was just accepted to the University of Washington School of Business….only 2% of those who apply get in….and she’s doing it right out of high school.  All of them are sharp, unlike me.

I’m hobbling along with my new walker and its fancy sliders.   I’m in tremendous amounts of pain today.  And this morning I thought I had the stomach flu but that seems to have calmed.  So, I’m eating soup, reading and will be watching “Criminal Minds” episodes soon.  Life is so exciting.  And the pain persists.

Got It!

I got my walker.  She called with the ok on Thursday, and I picked it up Friday.  Pam was with me, and suggested to the clerk (which I would NOT have thought about) that I also get “sliders” (not tennis balls) for the back, since wheels are on the front only so it’s hard to push around without them.  They had these cute ones that look like high top tennis shoes so I got those.  Pam requested she put them on, and I’m glad she did because I would not have known how to do it.  It took a bit of time and special equipment.  It’s unreal to me that these little things are not offered and the assumption is that it’s not a big deal.  Or the pressure of people waiting in line.  Well I wait in line, and when it’s my turn, it would be nice if it were a full service thing.  Again, it’s a medical supply place.  People need help.  Okay, that’s my rant for this post.

It is easier to manipulate around the apartment then the other walker.  Now it’s just a matter of getting used to using it.  Training myself to use it, that is.  I’m nothing if not stubborn.  But it’s in the living room with me and the most important thing is for me to grab it when I’m feeling weak or too medicated or the pain is through the roof instead of just the ceiling, lol.

My friend Anne is on her way over…she is such a good friend.  She comes by at least twice a month.  So does Roz.  I’m very lucky that way.  And I talk to my other friends, like Leslie and email other people out of state or my NF buddies.  So she’s picking up Indian food, my favorite, and we’ll do the usual.  Eat, talk and watch a movie on Netflix. 

I will be missing Passover (again) because it’s just not worth it to try and get there in the pain I am in.  I can’t sit anyway, so I’d be lying on the couch or in the bedroom during the Seder and meal.  Yes, it would be nice seeing everyone….but the price of getting there and getting home is too high for me, and a hassle for whomever takes me.  This is the kind of thing that makes my situation intolerable sometimes.  Missing family events.

Watched “Life of Pi” last night.  Great book.  Good movie, beautiful to watch, but knowing most of it was digital somehow takes away from it for me.   Not that they should have used a real Bengal tiger (not to mention the other animals) but the rest of the scenes were digital as well, except for the conversations between the two people as he explained his life.   It did bring things up for me when he finally started yelling at G-d.  Boy, I know that one!

For Granted

The other day I was talking with Pam about how easy it is to take the little things for granted.    For me, that’s everything from taking a shower, to doing my shopping.  I can, and still do all those things but it’s a challenge.  However, if I want to live independently, and of course, I do, I must force myself to move forward every day.  Today was a day without Pam, and I just got back from the store.  I didn’t go far, I didn’t get much, but some of what I got was heavy when bagged together.  You have to tell them to even out the heavy stuff or you’ll get a 5 gallon of milk, 2 pounds of potatoes and two dozen jumbo apples in one bag and cotton balls and marshmallows in another (not that I get most of these things but you get the drift),

And then there is managing all the things in life that get me what I need: Medicare, Disability, DSHS…managing government entities is a real challenge, and I’m just grateful I got it all when I got did because it’s looking grim.  Anyone who things Social Security will always be there better think again.  And finally, there is pain management, if you can call it that.  I have a safe system in place with regard to my meds and I actually take less now that I’m off the demonic methadone.  Thank you, G-d, for how it worked for 10 years and for my safe, though not quite complete, withdrawal from it.   People used to say to me “Well, Sherri, everyone must deal with the gnats in life”   That is true, people do.  Most people don’t have do it however, in mind-searing, gut retching, “take me now” kind of pain that only lets up a little once a week, maybe.

Can I still do things for myself?  Yes.  One just learns to adapt, like anyone else, to anything else.  Adapting to having less money due to the financial collapse of the US, or job loss, or divorce, death, etc.  All part of life.  My purpose here?  Who knows.  Maybe to learn about strength, learn about being less judgmental of people (you can tell by some of my less than nice words at times that I have a way to go yet), teach others through my journey about pain.  And about not making assumptions about people you see who look grumpy and angry all the time when in fact, they may “just” be in pain.  Because pain mimics anger with regard to your appearance.  Your face scrunches up, you tense up, furrow your brow, and turn down your mouth.  A real glamour shot.

When pain first came a’callin it used to make me so mad.  I used to yell at people all the time.  Finally, I was at the pharmacy one day in horrible mood and pissed because they weren’t filling it fast enough.  One of the assistants said to me “We know you are in pain, but you are making it worse with your anger”   What a gift that was!  Stopped me in my tracks.  I don’t always go in there anymore, I send Pam.  But from that moment on, I never behaved that way again.  I’m not sure she’s even there anymore, but I do appreciate what she said.  Snapped me out of it, it really did.

Walker

I decided after not being able to maneuver around very well in the house with my walker, that I needed a different type for my apartment and my doctor agreed.  So today, I went with Pam to the medical supply place near my home to pick one out.  The person who helped me wasn’t particularly helpful, but after both Pam and I asked a few questions (and getting the answers was like pulling teeth.  I don’t understand people.  It’s a MEDICAL SUPPLY place for heaven’s sake…one can presume that many of the customers will need a certain level of help and expertise….but that’s just me) and picked one out, and then another volley of questions about my other walker and who paid for it.  I must have told her four times that I paid for it, not my insurance but she kept driving the point home like I was lying.  I mean, I understand Medicaid and the rules.   Enough, already!   Another little buggaboo I have…when you are ill and on assistance, you’re stupid.  That is the assumption.   Always has been, always will be.  And when you get angry at the person talking to you like a three-year old with a learning disability, they see it as proof that they are right.  It’s endless.

Anyway, another leaf has fallen from the tree that is me.  I spoke with Ted today.  They took Hospice away from him because the drugs they put him on for pain have made a positive difference and he isn’t dying.  He TOLD them all this when they interviewed him for Hospice.  And they assured him Hospice wasn’t just for the dying anymore.  Now Medicaid changed their minds about it.  But he’s in a place where his pain will once again, not be managed, he’ll go back to being as miserable and debilitated as he was before Hospice, and he’ll have to go through the process again.  They system is sicker than every sick person in this friggin country, The United States of America, Inc.

Am I in a mood, or what?    

Oh, Man

Oh man.   I always want to write only positive things, but of course, that doesn’t quite work out that way.   I saw my neurologist last week and he added Cymbalta to the mix.  Hard to say at this point, but today, was either another “methadone detox” day (yes, I know it’s been eight months, but because I was on it so long at such high doses, this could last a year…at least it isn’t every day).

But when it hits, it hits hard.  Today, for eight hours I could not get comfortable.  Could not lay in any position, stand or sit.  My legs were jumping all over the place, my muscles were (and are) sore…And now my arms are almost as bad as my legs.  Lots of tumors, lots of pain...Pam came yesterday instead of today because I needed to go to my family doctor about a minor issue.  And tomorrow is going to be a short one for her too….she has a lot of challenges herself.  No one would do that job unless they had to or had a gold paved heart.  She has both, actually.

I decided to get a different kind of walker.  I need one for my apartment.  The one I have on wheels is too big.  I need a light weight aluminum one without wheels.  My balance is awful and I just can’t manipulate around here with it.  If I overmedicate (not over over, but you know) and get too sleepy at the end of the day, I fear a bad fall.  I’ve been lucky so far.   Don’t want to push it.

I just heard from an old friend whose sister in law passed away this week from pancreatic cancer.   She was over 80 but led a very active life.  Didn’t want to die until the pain came to visit…she only dealt with it for a few weeks, literally, but was begging for death at the end.  My prayers don’t reach anyone…at least I’m not getting the answers I long for.

I’m so sick of complaining about this.  I’m so sick of being unavailable to everyone.  I’m so sick of my job, which is managing the nightmare.  Managing the doctor appointments and making sure they are on a day after my new patch but also, a day that works for Pam.  It takes weeks and weeks for that to work out sometimes.  Keeping track of everything for DSHS, making sure I get all the discounts I qualify for, hoping to G-d that I can stay here after my lease is up….I know they want to remodel but I’m hoping they’ll cast a kind eye my way when the time comes.

3 Magic Words

I just watched this movie on Netflix called “3 Magic Words” which is spiritually based but full of science and incredible quotes and ideas.  I lose my way so fast when the pain zips past the number 10 on the pain scale and all I get is “sorry, there’s nothing we can do, are you planning on hurting yourself”?   No, I’m planning on hurting all of you, though (lol).  I usually find my way back again pretty quickly but am having trouble this time.  But I’m getting there.

While watching it, and thinking about G-d being inside all of us and a part of everything, etc., I realized that when I yell at G-d I am yelling at myself, blaming myself and thinking I did something horrible to deserve this, or that G-d doesn’t love me….which means I don’t love myself.  Tough stuff to think about.  I want to be excused from it all because it’s just too damn hard when I’m hurting so much.  But my pain is no worse, no better than anyone else’s.  The pity potty is just too inviting sometimes, as is the abyss.

I am listening to a new cd my therapist gave me…it’s bilateral inner mirror”…moves from the right to the left ear and has some kind of re-aligning power….I don’t know….but I’m listening while I write this, and I’m also feeling it through my body and working on being one with everything in the Universe.  I am going to focus on taking responsibility for my situation like I used to do.  I still do the “stuff” but I let this get to me too much.  It’s hard not to, when you’re in agony, that is true.  But it also doesn’t help to be miserable…it’s like worrying about things that may happen.  I do that all the time with regard to the planet.  It’s why I stay clear of the news, etc.  Too depressing.

So, focusing on the connection between me and everyone else and the power of healing will be my new aim.  Wish me luck.  And luck with the Cymbalta, the latest addition to my list of drugs.  I hate them all.  I wish I could just heal myself.  Why not?  It is possible, I do believe that.  I just don’t believe it enough, apparently.  Or I’m wrong.  Me, wrong?

Well That Was Interesting

Well that was interesting.   That disturbance I wrote about below?  It was the DEA breaking down the door of the person downstairs.   My other neighbor said the plaster all around the door is crumbled too.  And the manager had no idea what I was talking about when I called because of maintenance repair not yet done, and asked about the noise (I didn’t know at that time is was the DEA).

Later, when the maintenance guy came, he said the police wouldn’t tell them anything.   I still didn’t know about the DEA at that time, but called her when I found out.  I kind of doubt the DEA will pay for the door, which is $200, she told me.   Anyway, it was a major oxycontin drug raid, primarily done in Spokane, WA, but there was one person arrested in Mountlake Terrace, where I live.  The building I live in.  Right below me.  If this had happened when I moved it, I would have been concerned.  This woman they arrested has a toddler.  That ticks me off more than anything else.

But here is what is interesting to me.  Everything I wrote is true, but that alone doesn’t mean she is guilty.  My instant anger about her child was a clear indication that I had already tried and convicted her.  I’ve only said hello to her in the past, and never see her unless we both happen to be coming or going.  She is rarely home.

When I awoke later that morning, I had the thought that the police had banged on my door by mistake because it was so loud.  I asked myself what if they got the apartment wrong for real and I was dragged away?  What if all my neighbors thought I was a drug dealer?   I mean, I don’t look the picture of health and the few people I do know, know that I am sick.  But that’s a short walk to recreational drug user.   The bottom line is I only know what I read and hear about.

Having NF has taught me about the media as well.  I have seen so many mistakes about NF (always called a “disease” when it’s a disorder…two different things) that I have to wonder about everything I read.  And in today’s “as it happens” news culture, it’s hard to believe anything.

Anyway, my scripts came yesterday, I filled them, and I need that one right this minute….pain ratcheting up for some reason.  It’s patch day!  Yea!  Pam just was here and now she is at the store for me and then she’ll come back and finish up for the week.