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Monday, March 23, 2015

A Gaping Hole

There are many gaping holes in the US Medical infrastructure and this one is no exception.  It’s actually a hole within a hole.  I  want to make it clear this is by no means a negative attitude about my condition.  It's an observation about what is missing for those of us without the same option as those who are dying.

Firstly, only a few states have right to die laws, mine included.  So the fact that most states don’t recognize or give those who are dying the dignity of choosing to let go on their own terms is the first hole.  And within that, lies the secondary issue.  I call it the “No By When Date” or “I am in the don’t qualify hole because I can still buy green bananas”.

One must have been given a diagnosis of six months to live (or less) to qualify, verified by at least three physicians.  I can understand there must be guidelines so that someone just having a bad day can’t access the drugs needed to get the job done.  The line must be drawn, I get that.  However, there are hundreds of thousands of people (including me) who do NOT have a terminal illness but rather a horrifically painful chronic, untreatable  condition that no drugs can quell, no acupuncture can lessen, no meditation or music that takes one out of their bodies and away for more than five minutes and no other distractions that work.   All of the above did actually work for me for hours, sometimes a few days at a time.  Not anymore.

The doctor keeps claiming there is no change  (though no MRI for a year) but here’s the thing.  When tumors sit on the sheath of the nerve for years and years (my whole life, but worse the last 15 years) they wear down the sheath and end up directly on the nerve.  No tumor growth is a good thing for other reasons but makes no difference in terms of less pain.  The tumors scar, which also rubs on the nerve.  So the pain is non-stop and the doctors sometimes haven’t a clue.

So I live in agony and my only options are to just try and deal with it or take my life without the permission or help from Death with Dignity.  I would in a heartbeat some days but I let fear stop me.  Fear that I’ll get it wrong and leave my family in a worse state than they are already in with me as member.  If I get to that point, I could look it up on the Internet, but would have to send someone out to get what I need since I don’t drive anymore.  Not likely to find anyone willing.  I am blessed in many ways, I know that.  But neurological pain is beyond description and for me, it never ends unless I manage to sleep.  

I was just in the hospital for two weeks (two separate stays) since February, trying to get my pain under control.  My family was ready to send me to a care home but I managed to convince them that with a little more help from the state, I’d be fine.  I got that help, plus my family found a fresh food delivery place that comes once a week.  I order online, they deliver.  Eating is a major challenge for me so prepared healthy meals are welcomed.  But I’m thin as a rail and ready to rock out of here.   I feel like a tree with its leaves all gone; I literally never leave the house unless it’s for a doctor appointment.  I used to go shopping with my help.  Everything is a challenge and the only way I can contain the pain is to move as little as possible.

I still welcome a good book, movie, music and laugher with friends and I get all that all the time.  I’m just painfully tired.  Pun intended.

And yes, I KNOW that there are plenty of people who are worse off than I am.  In fact, I am aware that compared to most of the planet, I am beyond blessed.  A roof, family, friends, access to medical care and food (if I want it).  So I get it.  But when the pain is beyond what I can handle, when like the pain sheath, I am worn to the bone, when I feel it is time for me to bid farewell, I should have that option.  Just like the people with the “By When” date stamped on their heads.   When you live in agony for 15 years,  when your body is addicted to opiates that you would like to toss out, when you have lost   about a quarter of your body weight and when you are through struggling you will know when it’s time.

I read about the woman in Oregon who was diagnosed with a brain tumor and made that choice.  It was all over the Internet.  There were the people who haven’t a clue who called her a coward, and people like me, who were jealous but happy for her.  She was anything but a coward.  It takes guts to make that choice.  She said she was afraid of the upcoming pain.  She had reason to be.

Let’s work on getting this changed, shall we??

Thursday, March 19, 2015

Posthumous Happy Birthday

Hey dad, March 20th  (tomorrow)  would have been your 91st birthday but you passed just seven months shy of that mark.  I still miss you every day.  I know we were not close when I was a kid, but thankfully we mended things while I was still in my twenties so now, just past sixty, I can be grateful for sewing on those patches which allowed us to have all the fun, fights and love that go into a healthy father/daughter relationship.  I’m posting this today so I don’t forget, something that has been happening a lot lately.

The end wasn’t easy for you in terms of your heath, and sadly, you felt much of the physical pain that I am familiar with though for a different reason.  You often blamed yourself for my genetic disorder though no one in our family had it prior to me so no blame was necessary and never would have been at any rate.   A posthumous happy birthday to you dear dad, in whatever realm to which your spirit has carried you.  Knowing you are now pain free is enough for me to be grateful and I will be eating copious amounts of chocolate to celebrate the occasion.  Hope you get something sweet though that date probably means nothing to your soul.  But what do I know.  If there is chocolate, eat some for me.  70% or higher, please!!

I have been in and out of the hospital of late but am doing better now.  Jeff and Tami have been a great help to me physically and emotionally.  And because of your generosity, I have a food service that delivers meals once a week.  They are healthy and yummy and I am gaining back some of the weight I lost after some surgery in January.  I gained it for the surgery knowing I’d lose it so now I’m getting back to where I was.   I’m going to sell my car and that’s hard but hey, I haven’t driven for eight or nine months at least.  I was fooling myself thinking I could drive again.  I was actually hoping to have the surgery before you passed, thinking I might be able to drive again afterward. But I recently had a dream where I was driving, wondering what I was doing behind the wheel.  So I guess it’s the timing was right.  I also have more help coming in.

Accepting my situation has been a challenge.  When I surrender, I’m relatively okay.  But the “woulda, shoulda, coulda” song keeps running through my brain and I have to stop it before my anxiety goes berserk.   I just try and watch my hummingbirds, the eagles on the web cam, and movies.  I read, write and visit with friends.  And I think of you, mom, Ida, Ruth, Esther, Rose, Bunny and all the other strong women/men who were in my life on Earth and continue to be in my life…wherever you/they are.  I feel you all and when I close my eyes, I see.  I don’t want to take you away from what you are doing now; just know I feel you with me.   All. The. Time.

Tuesday, March 10, 2015

Coping Skills

I am trying to track when the crap hit the fan for me anxiety-wise.  I’ve always had it when the pain got bad, but now it’s an island on to itself.  I believe it was two weeks after my surgery, when I had that incident of not being able to make it to the bathroom in the middle of the night and having to call 911.  The “crime scene” incident.  Also, I had told myself that if the surgery didn't work, I'd end my life.  A lot of pressure to put on myself.  Yes, I can change my mind....but still.  I mean, my eagles will be hatching at the end of the month, can't miss that, right?  LOL

  I’ve been in the hospital twice since that time (in addition to that one).  For a week each time.  I do believe it’s fear.  The stark reality of what my life is, how it presents itself and how I am not ever going to get any of my old life back.  The burden I’m placing on my family, etc.   Breathe.  Speaking of which, one of the docs at the hospital told me there is an Apple App called Breathe2Relax.  I tried it.  Nice, but hard for me to maintain.

I have often compared it to being a tree, with all of my “leaves” falling off; losing bits and pieces of myself every few months; not being able to drive anymore, needing help with my ADL’s, (activities of daily living)  etc.  All my “tricks” for keeping sane have slipped away and it has gone way, way beyond dealing with pain.  If I could only hang onto what I know helps me stay sane.  The breathing, music, oils, acupuncture, etc.  But it seems I can only hang on for a few seconds at a time now.  It used to be a few days, then a few hours, then a few minutes.  Now it’s seconds.  And sometimes, not even that. 

Then I think about my dad’s death, and how on the 20th of March it would have been his 91st birthday.  How close we were.  How little I saw of him, even with him living 50 minutes from me.  Acceptance.  So hard to do.  Help me G-d, please help me stay focused, stay strong, stay in the moment, stay grounded and just, well, stay.  Three hospital visits, the shortest being the surgery, was just overwhelming.  It WILL take me time to get my grounding back.  Sadly, people like us with chronic conditions that are not terminal but in which we bear tremendous, untreatable pain, do NOT qualify for Hospice or assisted suicide, which is legal in my state but not for me.  Something has to change.  It cannot be adequately treated or described and I’m not the only one who tires of it.  My friends and family bear the burden as well.

The increase in the anti-anxiety meds (as opposed to what, the pro anxiety med?) may be having the reverse effect.  At least that’s what it feels like.  I have a call out to the psyche guy who was on my team to ask him.  I would take my own advice and just ask my pharmacist, but he knows me a little bit now.  I thought they were going to admit me to psyche at one point, I was so stressed.  And suddenly, my pain doc thought my pain isn’t neurological WTF??  After treating me for over 12 years that’s what he decides??   A complete reversal?   And being back on my old pain regiment isn’t pretty.

I’ve written this before but it bears repeating.  Doctors want to heal.  And if they exhaust everything in their playbook without success, out of frustration (perhaps) they simply move on to someone they can heal.  They aren’t monsters.  But they do want a “win” and seeing me doesn’t give them that.  I get it.

I’m just trying to hang on here.  Coping.  Sometimes it works, sometimes, not so much.

Thursday, February 26, 2015


I just got back home from a four day hospital stay trying to get my pain under control.  It was so bad Monday I called an ambulance to take me there…they changed my meds like they did a few years ago with the methadone, upped my fentanyl and took away the morphine and gave me diladid instead.  It’s better now….but I wrote the text below the day before the you know what hit the fan:


Panic attacks have been running rampant since my surgery.  Fear that in the long run, it will not make any difference and I will be left with making the decision I am loathe to make.   Fear that G-d does indeed hate me and has been waiting me to take the plunge since I had the first suicidal thought, at age 17.   The pain increases -d does indeed hate me and has been waiting me to take the plunge since I had the first suicidal thought, at age 17.   The pain increases ten-fold when in fear, and it’s where I live.   I called my therapist at 8 in the evening.  I can’t separate myself from my pain anymore.  I have no safe place to go, physically, spiritually, emotionally. I cannot see the forest through the trees.  Too many Amazon forest documentaries?   Don’t think so.  All that used to relax me just jacks me up more and more.  Nothing, not reading, movies, listening to BioLateral music, my oils, meditation…..NOTHING takes the pain, or the perception of pain (agony, really) away.  And yes, I pray.

I feel as though people have given up on me.  Except for those who I pay to stay with me.  But I can see them receding into the background of my tapestry as well.   Try though I might, I cannot pinpoint what is wrong, let alone how to correct it.  There is only one correction I want now.  Peace.  Eternal peace.  I have written this before, but the Catch 22 is that if there is no G-d, if it’s all an illusion, just who will I be angry at when it’s all over?  “I” won’t be here to be angry at anyone.  And if there is an afterlife, just what will I have fulfilled?   All I see is darkness and pain. It boggles my mind.  That is, what’s left of it.

I’m trying so hard to stay in the moment.  The second, actually.  It’s down to nano seconds.  That is about how long I can stay in that peaceful place.  Mere seconds.   I feel the air whoosh out of me and I am at peace.  Until the next wave.  What is fear, anyway?  STAY AWAY FROM THE NEWS is my chant, but it’s hard to do.    I feel I owe it to the world to pay attention.  Crazy, I know.  I worry about:

Losing access to my medication
Never again being able to leave the house
NOT dying
Dying in agony (stupid, eh?  I mean, WTF?)
Dying alone
Dying around a friend or loved one’s birthday or other occasion
Calling for help (as I did two weeks ago)
Not calling for help
Making sure if I choose taking myself out, I do it right…leaving problems for loved ones.
Missing the few things I enjoy (books, movies)         

It’s that time of year again for eagle watching but even that is not soothing me as aren’t the hummingbirds (though I still feed them).  I have painted myself in some horrific corner for which there is truly, no exit, but one.  Unless something changes fast.  What?  I don’t know.  All my positive thinking,   This started the night before my post op appointment and hasn’t really let up.  I was worried about it, but the panic came racing in from nowhere.   All my sure fire way of calming the waters does nothing.
Are my prayers being answered?  Is THAT what has me haunted?  That G-d is angry because I didn’t push harder (though how much harder could I have pushed??)  So the glaring question remains:  What am I afraid of, and why?   I’ve been praying to an end of my pain for as long as I can recall.  Maybe, G-d is finally responding to me…it’s what I want, right?   The REAL fear is sticking around with no tools to cope.  I also must keep in mind that it’s only been three weeks since the surgery, with one major hospital visit emergency two weeks after that….so really, I am recovering from the UTI that sent me there.  The one that made my apartment look like a crime scene.

Taking this in account, I am praying the slide into oblivion is a temporary one, or that …well, you know.

Wednesday, February 18, 2015

Post Op

My sister took me to my post op appointment on Tuesday.   I spent the night at her house so we could leave from there, and was having a major panic attack once I went to bed.  Hardly slept at all.  Very frustrating.  But spending time with her and her husband, and their youngest daughter who was home just for the evening, studying for a mid- term, was wonderful.

The appointment was good; didn’t see the surgeon but I knew that he wasn’t going to be there. Some of the rest of the team was there and went over everything, took out stiches behind my ear and told me the numbness I feel down my left arm should go away, eventually.  May be a year.  All in all it was good, and blessedly fast.  The appointment was at 8:15 and I was home by 9:30.  Really quick.  I wrote a thank you to the patient care coordinator to tell her how happy I was at that hospital.  I think it is  important to let people know when they are great because so often (in healthcare) they aren’t.

In the meantime, I’m having those panic attacks a lot more lately.  I don’t know why.  I feel sad and separate from the world.  I try to stay away from the news, but it bombards you.  I have been playing with my new iPad, a gift from my brother and sister in law, and I had it with me the night I stayed at my sister’s.  While in panic mode, I thought about going online just to DO something and realized I would drift to the news, which would not be good. So I watched part of a funny movie (Antz) which didn’t help.

I feel like I am losing my grip.  I just want it to be over.  Thinking of the future is beyond scary.  I know it is for everyone.  I just lose it thinking about this pain going on and on. BUT, maybe some of the leg pain will dissipate over time.  That would be good!  In the meantime, the battle for inner peace rages on.  Battle. Rage. Peace. Hmmm.  Interesting choice of words.  Ya gotta laugh at yourself sometimes, right

Friday, February 13, 2015

Two Weeks

I had that set- back last Saturday that I wrote about…hoping the UTI is under control.  I saw my urologist and they will tell me Monday what’s what.  Drinking tons of water…not having much luck in the other direction.   Hopefully, that will clear up too.  It was so good for so long.  I’m going to assume the surgery caused the change, and it will right itself again.

I have my post op appointment on Tuesday.  My surgeon isn’t going to be there but they want me to come in anyway….I know what they want to talk to me about….the bleeding soft pallet.  I don’t really care about seeing the surgeon as long as someone from the team is there to answer questions.  My sister is taking me to her house the night before as the appointment is in the very early morning hours.  Which means I’ll have no help on Tuesday morning.  But I have someone in the afternoon so it’s all good.

I’m just frustrated about so much….not driving, mainly.  I am hoping that eventually, when the pain from the surgery is better, that leg will be better.  But my other leg is bad too. The neurological pain isn’t going anywhere but hopefully, some of the topical pain will leave.  Right now it hurts just as much as before, but I’m sure it’s from them digging into my muscle to extract the tumors.    I’ve been saying for years that my back up pain medication is like taking an MM or a Tic Tac.  What they gave me after surgery is a joke.

Still, it’s the FIGHTING against the pain that makes it so unbearable.  Fighting because, well, who wants to live with this kind of pain?  But the naked, twisting truth is, relaxing into it makes it lessen.  Not by much, but it’s all about degrees.  And keeping that mindset is a constant struggle.  And right now, I am adding surgical pain to the mix.  I can already tell that the relief will be on the low end of what the surgeon told me to expect.  Because what he did will not help with the neurological pain.  That said, if there is some relief from the topical pain, I will feel blessed.

Sunday, February 8, 2015

What Next?

I knew I’d have up and down days but last night was a real challenge.  A friend was here for dinner and a movie and I felt fine…shortly after she left, my whole body was shaking and I couldn’t even operate my computer my hands were shaking so much.  I was dressed in a lot of flannel an buried under lots of blankets.  I was trying to turn on my laptop and listen to my BioLateral music but my hands were shaking so bad I couldn’t do it.  Next was a zinger.

I went to the bathroom and didn’t make it… looked like a crime scene in my apartment.  I fell, could not get up and was trying to clean up the mess but my bowels were on a rampage.  I could barely drag myself to the front door to unlock it for the ENT guys who I called by pressing my button.  Took three tries, but I did it.  It was difficult, to say the least.  They had to lift me off the toilet bowl because my legs just didn’t work.  They CARRIED me to the ambulance.  I didn’t want to go but the guy said, “Ma’am, you can’t stand or walk.  You’re going to the hospital”  The fight was left out of me and I went to the closest hospital, not my normal one…Turned out I had a horrible UTI….blood in it.  They said I was  dehydrated and gave me fluid along with an antibiotic  I wish he would have asked me what works, because the one he gave me does not.

My helpers are beyond kind  Its Sunday, don’t see them on the weekend, but my siblings have a lot on their plates right now so I called one of them.  She came by at 3 am because at that point, I wasn’t sure I was going to the hospital.   Then she came and got me when I was done, at 3 pm.  Then another helper came (her day off too) and TOTALLY CLEANED THE MESS with some major carpet cleaner thing she has.

I was so embarrassed but It’s spic and span now!!

My legs are just about useless.  They hurt and if I’m not flat for long periods of time, I can’t walk  Sheesh

Wednesday, February 4, 2015

Stiff as a Board

There was this “levitating” game I used to play as a kid called “Stiff as a Board. Light as a Feather” that, if one person was lying in repose, four others, two on each side of her or him, would put two fingers each under her and mutter those words three times.  At that point, the person lying down would feel very light, could be lifted and eventually, when we removed our fingers, would be levitating.  In theory. Lots of sore behinds.

Anyway, I have the stiff as a board part on my left side. It’s amazing how my body is changing and adjusting each day.  My tongue and mouth are still a tad numb and I called the doctor about it.   The nurse called back and said he had no idea what that was (it’s common right after surgery due to intubation, but not this long) and told me to call the anesthesiologist which I did.

He called back and spoke with me a long time (I am over the moon impressed with everyone at Harborview Medical Center in Seattle).  He wasn’t on the team, but read from the chart that I was difficult to intubate and that my pallet bled and I should see an ENT person.  They were going to tell me at my follow-up but after I told him about the numbness, he suggested I call now.  I told him I was sorry I called, and laughed. He said he didn’t’ want to alarm me and I told him it would be impossible to do that at this point in my life.  I’m not worried.  No breathing or swallowing problems and I won’t put my body through anything more unless it’s necessary.

My body hurts a lot right now but amazingly, with the exception of a very bad pity potty experience when I left the hospital, my mental health is hanging on.  I need to make a HUGE effort to resist the black hole; it calls me constantly.  But I talk to my helpers, I talk to my tumors and I now have the once a week support group from NF….for two more sessions anyway.  And of course, I have this and all my NF friends that are my second family.  My own family is always checking up on me too, glad that I have the help.

I took a shower on my own, no help here at that time but felt strong enough or I wouldn’t have done it.  I have to be very careful because some of the steri strips are still on and I don’t want to pull them.  My help reminded me of that when she saw me tugging at one.  She asked me if I wanted to bleed out. LOL.   The weather is cold and rainy so I hurt more.  And I’m glad I’m not going to any stores, hearing about the “tragic” loss to New England via the Seahawks.  It’s a game.

I’ve been wanting to post this song for a long time but it was never available on UTube until now.  I think the word “Harbor” (Harborview) made me think of it now.  And the wonderful sunset from my 8th floor window

Monday, February 2, 2015

Back from Hospital

Whew.  Made it.  Home again after a night in the hospital and two at my brother and sister in law’s home.  My help is here, and they had help for me at their home (we had no clue how I’d be after….so far, so good).

 I mean, the pain is different on my left side and to get to the tumor on my wrist, they sliced down the front so it looks as if it were a suicide attempt.  And that one hurts the most.  Totally, they got nine tumors.  Out of several hundred, but hey, these were different. They hurt differently; topically, not like nerve pain.  The one on my wrist was about the size of a large pistachio, which is not big, but I banged into it all the time and the pain was horrible.  Same with the leg tumors.  Right now, it doesn’t feel much different but it’s only been a few days.  And the steri strips will fall off when they are ready to.  I keep two covered because they look so awful

I have to stay positive, but it is a challenge.  I was reminded you don’t have to look far to find something positive.  I had a room in the hospital on the eight floor that looked out over the Sound and downtown Seattle.  I happened to glance out right when the sun was setting and it was awesome.  There was this bank of clouds sort of sitting in the foreground and then blue sky and the sunset behind.  The tallest building in Seattle was to the right and when it got dark, they turned on these running blue and green lights in two places….for the Seahawks.  Who sadly, lost the Super Bowl in the last 30 seconds with just one yard between them and a win.  I am not a football fan, but it’s all I’ve heard today.   The “epic” loss they are calling it.  Well they had an “epic” win two weeks ago that shocked the hell out of everyone.  We forget those moments so fast sometimes.  Yes, it as a huge disappointment.   But it was a great game.

So, it’s one day at a time, as always…more pain pills but I’m trying to keep it minimal without torturing my body.  And of course, there’s my medical marijuana. many thanks for those of you who sent me wonderful messages and prayers.  They worked.

Thursday, January 22, 2015

Round and Round

I’ve been thinking a lot about my surgery and what I will feel if this doesn’t relieve me of at least some of the pain.  It’s my biggest fear.  Not that actual surgery, but the “what if’s” when down the line, I’m healed from the surgery but the results aren’t what I hoped for.  And when I doctor said “A 20 to 80% reduction in pain” I thought that 20 sounded good.  But what if I don’t get even that?   I have a lot of supportive people in my life, including someone whose daughter has NF and who has been telling me it will make a difference because it helped her daughter when she had pain in her arm.  Bless her for telling me that!

Life is constantly throwing you off track, regardless of who we are.  My washer/dryer broke last week and after the maintenance people tried six times to fix it, it’s officially toast and will take two weeks to replace.  So now I have the laundromat to cope with.  I found myself getting twisted in a knot about it but then realized I do have help and it will get done.  And I’m trying to organize my meds so that I have all I need after the surgery so I don’t have to worry about getting them.  It’s not easy, for one of them isn’t due for a refill until after the surgery.  All these little things are like gnats flying in my face.

So I asked myself, what will I do if it doesn’t work?  If I know that my life will continue to be what it’s been pain wise, as far into the future as I live?  And it’s a challenge.  Think of a big circle.  I start at the abyss at one point on the circle, worried, out of control, in agony and on the pity potty, wanting nothing more or less then death.  Praying for it.  Trying to get those that I love who have passed to help me cross over.  You know…really crazy thoughts.   What stops me?  A couple things.  I tell myself that I am here to learn something, to grow spiritually and to be as gracious as I can with what I have been handed.  And what if I tried to off myself and it doesn’t work?  What if I end up in worse shape than I’m in now?  What will that do to my family?  My family knows how I feel and would forgive me if I were successful, but if I’m not?  Heavy burden to put on them.  So I try and move away from that point on the circle, and use all the skills I have to move forward, stay in the moment, and just accept whatever happens.  And everything lifts for a little while.  I write, watch a movie, play a game, read a book…and I feel better.  But eventually, the abyss comes back around, or I go back around to it.

Yikes.  The NF support group I’m involved in helps.  It will end in five weeks, but we have each other’s contact numbers through Skype.  And I may miss the session after my surgery.  We shall see.  In the meantime, I’m hanging in there, like everyone else!
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