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Monday, July 29, 2013


I saw my dad and my sister Sunday morning, my brother and his wife Sunday evening.  It was lovely.  Now I am in agony.  My legs, my feet feel like they are buried under concrete.  I know it’s hard to grasp, but my feet are both numb and killing me.  Nerve pain is the worst.  It’s felt everywhere and it’s getting worse all the time.  I just want to take my bat and balls and go HOME.  Oh well.

I haven’t heard from Pam since last Tuesday and I’m worried.  I left one message on Friday but I don’t want to keep calling.  I knew this was going to be a lot tougher than she imagined it would be, but I sure hope this is just normal recovery stuff and not anything else.  I will assume I would have heard from someone otherwise, but that’s not always true.  If I hadn’t called Ted’s cell phone the day I did, there would have been no one to tell me because no one thought of calling.  Scary.

Which brings up my eternal question:  Why NOT me?  People get awful diseases and die from accidents, etc., all the time.  I go on and on and on like the Energizer Bunny (is that still around?) when all I want is for it to be over.  Boy, I’m in a mood.  Just a mood, it will pass.

Marti, the person standing in for Pam isn’t nearly as motivated as Pam, doesn’t clean as well and has to be told every step of the way what to do.  I get that it takes a while to adjust, but she’s been with me at least six times now; I don’t need that much, but what I do need has to be done.  And I have to tell her each time the same things over and over, getting up to show her.  It isn’t that helpful so far.  I may call for someone else if it’s not better this week.  Still, I get that I’m lucky to have the help.  Just not when I’m in agony and haven’t the energy to go over everything again and again.

I am listening to my BioLateral music from David Grand while I write this.  it’s interesting; my therapist gave me a CD and the music (and sounds) move from left to right…it’s a variation on this eye movement therapy that is supposed to help with trauma.  It really does calm me down, whether I listen while writing or reading, or just listening with my eyes closed.   Anyway, it’s worth checking out for anyone suffering from a trauma related issue like PTS or chronic uncontrollable pain….he’s worked with people who have come back from the war with those issues and has had success.

I wake up so stressed each morning and then run around doing stuff I just need to get done; taking care of Oliver being the most important.  I dread the day he is no longer with me, assuming he moves on before me.  I don’t think I will be able to get another cat when that happens.  And I can’t bear the thought of living without knowing there’s another heartbeat in the house.

Tuesday, July 23, 2013


Yesterday I had a miserable day pain wise and when that happens, I sometimes go into overdrive thinking about things.  I know it’s useless to ask “why” all the time even if it isn’t a “poor me” question but rather, a spiritual one.  As in “what am I supposed to be learning from this?”  Either way, answers don’t come so why keep asking?  It’s like self-flagellation of some kind.

So I was telling my therapist about how I sometimes fantasize about getting healed.  How I sometimes imagine I could heal myself if I just concentrated hard enough, tried hard enough, meant it enough.  I don’t think that I am not good enough if it doesn’t happen because I don’t really expect it to; it’s just a fantasy. 

But I did start to think about what it would mean if I were to succeed in ridding myself of my NF.  And I must admit, as much as I don’t want to live like this anymore, being healed is also a scary thought.  Because if I wasn’t in this kind of retched pain, if I didn’t have tumors growing everywhere, if I didn’t have the digestive issues, if I wasn’t on all these freaking drugs…what would I be doing with my life?  I’d have to give up the little I get from disability, I wouldn’t need the help I get, and like everyone else who is healthy, I would have to face the world in a different kind of way…a way that is just as scary as what I face now; just different.

So while I get upset on days that the pain is through the roof, or when I can’t get out to see people or even do my own shopping and other errands, I remind myself that everyone has challenges.   We tend to compare our challenges to other people’s and it’s not really fair, even if you consider yourself the lucky one.  It’s not fair (to compare) because we don’t know why we were put here, let alone why someone else was put here.  Granted, there are a lot of people roaming the planet who think they know all the answers.  And that may be their journey; discovering that they don’t know all the answers after all.

That Chinese proverb which is really a curse (I mentioned it before) “May you have an interesting life” is good to keep in mind.  And right now, there are way too many distractions (“interesting”), the majority of which are negative and scary.  Fear keeps us from moving forward just as much as too much of a good thing does.  And right now I am very afraid for the planet and everything on it, including us.

And back to the mundane:  I just got back from the eye doctor.  The fifth appointment due to screw ups.  Now he says I have “severe” dry eye and need prescription strength drop for it.  I have to use it four times a day and go back to see him AGAIN.   He told me once he had a patient who came back 37 times in one year. Not sure how that made me feel.  Oh well.  The fun just never stops!!

Monday, July 22, 2013

Letting It In

Pam called a few hours after her surgery and sounded well, but she was still pretty sedated.  I suspect the weekend was a bit challenging and I’m hoping she is doing okay.  I left a message at her house so maybe her son will call and fill me in.  Her replacement is a bit daunting.  Showing her the ropes and where everything is has its moments; she isn’t very motivated and I think she has some social dysfunction.  I’m not being mean, just an observation based on some things she has done and some things she has not done.  Oh well.  It was hard with Pam in the beginning.  I just keep my eye on the end of August and hope that she’ll be back by then.

I spend time on Huffington Post and occasionally make comments on the stories I read.  Once in a while, I mention my NF and people are usually very kind in their responses.  Usually.  The other day this guy  wrote back (in the comment section) that I was “sitting around feeling sorry for myself” and that he “had a brain tumor” and was always happy go lucky or something like that.  Don’t know if his brain tumor is real of course.  But as always, I started wondering if what he accused me of was true.  I mean, I have my moments, but I know I don’t sit around feeling sorry for myself.  I get angry at my condition, but do I make a difference to anyone? 

A few hours later II get an email from this woman who stumbled upon my blog who also has NF.  She thanked me for what I write and shared her story with me.  I had to smile, as I wrote her back, because this is about the third time that has happened to me; I’ll be questioning my worth and feeling like a big fat failure in life and bam!  I get an email like the one this woman wrote.

It’s funny how we open wide the door to negativity but slam it shut and cover out ears to the positive thoughts/comments that come our way.   I don’t know where that comes from…perhaps being taught at an early age that thinking well of ourselves is not acceptable behavior.  I think that’s changed a great deal, at least I hope it has.  Teaching our children that it’s okay to feel good about ourselves is healthy, not a sign of being self-centered or self-serving.   That happens, sure, but teaching balance is a good thing and will make us better people, not people who shrink at the first sign of someone trying to bully us or knock us down to feel better about themselves.  Of course, there are bullies who do massive damage to our souls no matter what we are taught.  This guy sounded like one of them.  And I let him in.  

Personally, I need to learn to laugh it off.  I used to be able to do that if someone said something outrageously erroneous about me.  Now, not so much.  I think my NF and the pain that zaps me of all energy; all ability to stand up for myself is part of it.   I just wimp out.  Not always.  When the pain is manageable, my old steel comes out and I just fight back; but when I’m in pain?  Fogedabodit.

My dad is someone who fights all the time; he’s in a boatload of pain too with his spinal stenosis.  But he gives me strength to keep fighting.  And he’s 89!

Friday, July 19, 2013

Just Truth

Pam is in surgery as I write this and I’ve been praying the morning away.  Marti was here yesterday, and she’ll work out fine but she’s much different than Pam, that’s for sure.  It’s been a bit challenging physically because I have to show her everything until she’s familiar with where things go, how I like things done (I’m not fussy at all, but I still have to show her the ropes) and so on.  Once she knows, it will be better.  Meanwhile, it really is okay; I enjoy her and as it was with Pam, it will get better as we get to know how we work together.

I’m hoping Pam will be able to come back but nothing in life is for certain or forever so I’ll have to deal with it if that happens.  It’s been hard letting go of that part of it.  Control.  I want to jump in and teach Pam how to navigate the medical system (she hasn’t had to) but it’s none of my business.  Really hard. 

The pain is bad today and Marti comes in the afternoon.  That’s new too…always had morning people.  I will need to go to the store and if it was Pam, I could just send her, but she doesn’t know what I like or need.  I hope I can get to two stores.  If not, it will have to wait and it will be a while because she doesn’t come Monday and Tuesday I see the eye doc.  Yikes.  Perhaps I’ll be able to go alone one day.  I am so grateful I have this; I don’t know what I would do otherwise.

I haven’t been sleeping well and I think it’s because I had doubled my Celexa (sp) to help with the negative effects of the Lyrica.  But I’m feeling much better emotionally so I am going to go back to the original dose.  I started doing that yesterday morning and I slept much better last night.

I have chemicals coursing through my veins, and very little blood.  An addicted vampire would love it.  Wouldn’t get much blood but a mouthful of narcotics.  Oh joy.

I cancelled the MRI of my head.  I know they’ve grown, but they can’t do anything anyway….I asked my pain doc and he said my neurologist scheduled it.  And I said, well, if they’ve grown, will they be able to operate?  He shook his head.  So what’s the point?   Not a “poor me” thing, really.   Just being practical.

The tumors are sprouting up like weeds all over my face, arms, legs…’s really awful.   A friend was here the other day when my dad came over with my nephew and she snapped a pic of me with my dad and Ben, my nephew.  I look HORRIBLE.   No wonder I never look in the mirror.  My friend told me to start wearing some lipstick.   It makes me look worse.  Reminds me of when I did that for my mom when she was ill.  Everyone tells you how “good” you look but you know they are just trying to be kind.  I’d love to hear the comments made when I’m not in the room.  I mean, I made them too once upon a time.  Not mean things; just truth. 

Tuesday, July 16, 2013

My Job

Like everyone else, I have to stay on top of things like bills, appointments, accuracy in my statements, etc.  Unlike most people, this is my only job.  That may not seem like much, but trust me, when you are in the kind of pain I am in day in and day out, it is burdensome.

You see, people don’t get it, nor can they.  So when I went to get my eyes checked (the third appointment due to them making a mistake on my newest pair) and they were running 20 minutes late then offered me an appointment three months down the line, I didn’t have the energy to argue, I just went home.  In pain, no further along to solving the problem.  I wrote an email to them a couple days later letting them know how I felt about being treated like that after coming there for 12 years, and they called and got me in next Tuesday.  Admittedly, finding a time was difficult due to the change in my care- giving schedule.  I tried explaining that to them, but I don’t think they cared.

Then I ordered one of Oliver’s meds online and after placing the order and paying for it, they tell me one of the things is out of stock.  It was supposed to be back in stock Monday.  It still isn’t.  And I paid for it.  And Oliver will run out.  I emailed them letting them know it’s not cool to charge a customer BEFORE you fill the order.  Now that they are very low on this drug and they are getting a very limited supply back in, they probably won’t fill it for me; just reimburse me.  Poor Oliver.  That better not happen.

Then I got a bill from someone I should not have gotten a bill from.  Took a few minutes to straighten that out.  All these things over two days.  I’m sure people might read this and think, “She’s got nothing to do, what’s her problem?” but if that person had 1/10th of the pain I am in, they’d know.  Neuropathic pain is torture beyond measure because it’s constant….well as close to constant as it gets.

I get way too stressed out when these things happen because I am so limited about what I can and can’t do.  Mostly can’t.  My eyes are so bad; I told the eye doc that reading is one of the few things I enjoy and making me wait another three months after you made an error is not acceptable.  And it’s not. 

The Serenity prayer is a good reminder; but it’s not about courage for me….it about strength.

G-d grant me the serenity to accept the things I cannot change, the courage and strength to change the things I can, and the wisdom to know the difference

There.  I fixed it!!!

My new caregiver will probably think I think of myself as a princess when she sees how my bed and couch need to be made; the tumors on my back, my legs, my arms hurt so much I need to be on something as fluffy as possible and Pam Jerry rigged up something for me on the couch and she is an expert bed fluffer!

Sunday, July 14, 2013

They Listen

The weather has been beautiful and for a fairly long time; a couple weeks so far; unusual for Seattle.  I’m glad for it, but it’s hard not to be able to go out and enjoy it.   I went to see my eye doctor at his new incredibly big and beautiful building (it was a modest little place for the past 12 years) and the prescription I got does not work; my old glasses work better. So back I went, they said it was right, but to come back the next Saturday for an appointment.  So I went in yesterday, they were running 20 minutes late, I was in agony and I left.  And they told me they could not get me in unit September.  I was in too much agony and shock to call them on it, but I’m calling Monday to tell them this isn’t right.  I’ve been a long time customer, they know my health problems, and now I get to stay in bad shape eye wise for another three months (by the time I get the correct lenses).  It really ticks me off.  Boy did I digress.

The point I was trying to make is that they are located in one of my favorite places, Edmonds.  It’s on the water, the ferries are running, the shops are small and independently owned (save for Starbucks, an eyesore to be sure) and people milling about, enjoying the wonderful restaurants, etc.  I used to go down there all the time.  They had weekend markets and a million other things to do.  My friend Anne and I would take her dog to the dog park on the water.   Now I can’t enjoy any of it.   And I miss it.  All of it.  Every day.  My friends talk about all that is going on now, all they are doing.  And I want them to; I don’t want them to have to listen to me go on and on about my pain without listening to what’s going on in their lives.  I’m sure it’s as hard and heartbreaking to listen to me as it is for me to listen to them.  But that’s what friends and family do.  They listen.

Anyway, it’s a busy time in Seattle; lots of festivals, long beautiful days.  And I’m in bed before ten.   And yesterday the pain was awful; it kept up so that I didn’t sleep.   I’m wondering again what the point of all this is.  It’s really too much.  I keep asking for help, and it does show up for a day or two each month, but that’s it.  So if that’s accurate (and if anything, it’s less) that means I have 24 good days each year.  Out of 352.  Huh.  Sorry I realized that one.

I did force myself to go to the Great Clips down the street from me.  I was looking like Eraserhead.  The whole event took less than 30 minutes.  Now I’m flat on my back again, watching the sunshine through the window and waving at the hummingbirds.

Thursday, July 11, 2013

And the Point Is?

Well, that was one of my toughest nights in a long while.  I fell asleep in front of the computer just before 10 pm and didn’t wake up until 12:30….in agony from the position I was in.  And I could not fall back asleep.  My legs were doing the same thing they did when I was going through withdrawal.   I took a couple Ibuprofin which actually helped a bit. 

I am once again struggling with “what’s the point?” asking questions to who knows who (okay, G-d) that have no answers.  Nothing like adding emotional torment into the mix!   You know the drill….if there is nothing but a black hole at the end of this journey there will be no one to yell at for putting me through this.

But the real question, the one I’ve never broached here is this:  If I knew beyond a shadow of a doubt that there was nothingness after death, OR, that it didn’t matter if I offed myself and perhaps that’s what I should be doing…perhaps that’s the test….not that I see it through but that I have the power to stop the pain and I should be using it.   People love to lecture about the sin of suicide but we are mere mortals and we know nothing.

There are four kinds of knowledge:

What we know we know (I know I know my name)
What we know we don’t know (I know I don’t know a lot about physics)
What we don’t know we know (falls into the “forgot” category)
What we don’t know we don’t know (by definition, I can’t give an example)

So what category does suicide fall under?  A lot of people think they “know” the answer to that one but really, it’s about belief and faith, not knowledge.   I say that one falls under the second or fourth category.

I am not about to kill myself; in my heart of hearts, I think it would be a mistake.  As I have written, I really think how I handle this will determine whether my soul gets to move forward.   I just know I feel like Frieda Kahlo when she wrote at the end of her life “I hope my departure is joyous and I wish never to return”

Time to start counting up the things I’m grateful for!  That helps.  Also, I had an epiphany a few days ago while standing on my deck in the sunshine.  I was having another bad day (the day after my one really good one….which comes every eight or ten days) and I thought about how I spent that good day thanking G-d over and over again….all day long.  I even sang one of my favorite ‘grateful” songs by Karen Drucker called “Thank you for this day Spirit”.  It got me through my mastectomy in 2005.  Wish I could post it here but she doesn't allow that song to be used.

Anyway, I started thinking I should be thanking G-d for the tough days too….because those are the days I have a chance to grow spiritually depending on how I handle it.  So at the top of my lungs I sang that song.  Pam was with me.  I asked her if I sounded awful and she said it really sounded great.  I’m not a singer by any stretch, but I can sing most of that song.  The middle part I can’t but the main chords are easy.   So, I guess gratefulness is about being thankful for everything; the good, the bad and the ugly.   Man I hate labels!!

I haven't added music lately; never get feedback one way or another about my choices....anyway, I tried making my own YouTube so I could use "Thank you for this Day Spirit" by Karen Drucker.   I own the CD that has that cut, but it's not on YouTube; it's "private"  I don't get it.  That song would sell like hotcakes if people kept hearing it.  Of course, it's not a new song.   Anyway, I made the video part, no problem.  A small learning curve.  But to add my music?  I don't that either.  I spent hours on it.  Now, it's time to use something else.   But if you can find that piece somewhere, listen to it.

So, here's another favorite, by Leonard Cohen

Friday, July 5, 2013

I Wonder

May you live in interesting times” is often considered a Chinese curse.  My sister’s first husband’s father gave that as a toast during their wedding dinner.  I leaned over to a friend and whispered “He just cursed them and he doesn’t know it”   Her husband died about eight years later, leaving her and their two young girls.  I don’t think there was a connection, of course.  Too much backstory that is not mine to tell.

The reason it’s considered a curse is because if the times are too interesting, it causes distractions that make it difficult for one to grow spiritually and work on your own soul.  I have few distractions save the agonizing pain and accompanying problems of NF.  However, if I don’t think of those things as distractions they become anchors to my spiritual growth.  The real distractions’ are my interest in science.  I read a lot about Stephen Hawkings; primarily because he’s lived over 50 years with ALS…the average life expectancy with that disease is 5-10 years.  Now that’s interesting.  What’s also interesting is his adamant denial of G-d, even calling it a “fairy story” along with Heaven.  Of course, scientists say that according to the "laws" of physics, it's impossible for bumblebees to fly.  And yet.

What scares me is when we reach true singularity; when everything becomes one and it’s all clear, when time merges and when we are able to upload our consciousness into a computer, thereby creating immorality for ourselves sans a body…will that prove there is no G-d?  I wonder.  I wonder a lot.  Does this mean I am growing spiritually?   I have had so many life experiences that convince me beyond a shadow of a doubt that G-d created all this. 

Stephen Hawkings says the Big Bang happened on its own.  The fact that he continues to live, lecture and learn is astounding to me.  Of course, he has the means financially to make sure he survives as comfortably as he can…he even communicates with a computer that gives him an actual voice so he can answer questions.  I tend to see his life as a miracle (while seeing my own as a nightmare) and his disbelief challenging to me.  Challenging because it is easy for me to vacillate between belief and nonbelief, depending on the day.

I have, however, experienced the presence of G-d twice in my life; once when I witnessed the birth of my nephew (thanks to the generosity of my brother and sister in law) and once at the death of my mother, whose soul passed through me on her last breath (my head was on her chest and the family was gathered around her, all holding hands).  Both times, there was a low buzzing in the room that lasted about 30 seconds and then dissipated.  I don’t know what else it was, but it did have its own magnetic energy.

I feel that energy sometimes when I journey by listening to my drumming.  Sometimes I ask a question, sometimes I just ask for help.  And sometimes it comes fairly fast, sometimes it comes much slower.  And the answers are not always what I want to hear, to know.   I just can’t give up.  I write a lot about giving up, but in my heart of hearts, I don’t think I can.  And if there is nothing after life….well, who can I be mad at?

Here’s the thing.  There is no one on the planet without challenges.  It’s a matter of degree, of course.  And, this cursing of my body is kind of pathetic.  Understandable, but pathetic.  When you think about it, whether someone wins the genetic lottery or gets a lemon, it’s all life.  Everything on the planet is carbon based life.  So we are all the same.  We just look different.  And as I always say, pain is something the body just does when it is in trouble; suffering is a choice.  I choose suffering way too often.

The negative effects of the Lyrica have worn off and my increased happy pill dosage has kicked in.  Can you tell?

Thursday, July 4, 2013


Well, the heat has abated a bit.  It’s funny because usually it doesn’t start to really warm up here until literally, the 5th of July.   Back when I was able to go out and enjoy the 4th, it was a big joke.  Now I don’t care so much what it does outside, As long as it’s not too hot.  No AC.  I’m still very anxious.  I wake up that way. I doubled down on my antidepressant so I hope that helps eventually.  The pain is a bit better today, thankfully.  I’m dealing the best I can…getting through the tough, tough days one second at a time.

Pam’s surgery has been postponed for a couple of weeks.  Too congested or something.  And now they need to take her gallbladder too.   She’s understandably scared and worried.  All prepared for surgery this Friday and now this.  However, I told her I just can’t talk about it anymore.  It is stressing me out because I’m so damn empathetic.  It’s not always a blessing to be that way.  Sometimes it’s a bit of a curse.  I have so much on my own plate and then I reach over and take things off of other people’s plates.  And I know why I do it; I just can’t stop.

I do it because I am so unable to physically help someone in need, I have to do it emotionally.  Like when my dad was moving here.  My brother and sister both worked like mad to get him settled and I couldn’t lift a finger.  So I stressed out about it because they were stressed due to everything else in their lives.  We are all joyous beyond words that he is here.  Still, even though we are in the same city, I don’t see him too much due to the distance and the problem with rides.  He was going to visit yesterday but he cancelled because he wasn’t feeling well.  I wasn’t feeling well either so it was just as well.

Perhaps all this reaching over and taking things off of other people’s plates has to do with being hungry.  I don’t actually even feel hunger anymore.  I can barely process food.  It goes in cycles and I can’t freak when I am really in a “not hungry” state of mind. It comes with pain. When I’m not in so much pain, I am hungrier.  So I play catch up when that happens.  But it doesn’t happen often.  And then I freak about my weight and it gets worse.

I can’t seem to stop my brain from doing things that make this miserable situation worse.  The one thing that helps a little is praying and meditation.  Having long talks with G-d about it, asking for help, etc.

It hurts too much to sit
It hurts too much to stand
It even hurts too much to lie
Flat down on the divan

It hurts too much think
It hurts to wonder why
It even hurts too much to pray
No answers make me cry

I can see the tumors pulsing
In my legs and on my arms
I swear I feel them growing
All the pain meds have no charm

I don’t pretend I understand why I keep fighting so;
But being in this unending pain makes me feel a bit like Job
Perhaps the fight is not what’s right perhaps I should let go
I don’t know how, I wish I did before I get too old

Tuesday, July 2, 2013

Lyrica a Bust

I haven’t felt much like writing.  The Lyrica is not working and the side effects are so bad I think I need to stop.  My anxiety is through the roof and I even hallucinated a few times.   I am bummed.  I really had hoped that it would work enough to give me a few good days more than I’m getting….which is about one day a week if I’m lucky.   I don’t know why I can’t tolerate it.  It’s been a month; the side effects were like this the first two weeks and I thought I could wait it out but I’m not so sure.  The pain doc wanted me to add more anti-anxiety stuff but I don’t want to take any more of that crap!   I hate this…..I just don’t know what to do.   Plus I read some awful stuff about withdrawal from Lyrica….supposed to be worse than opiate withdrawal, according to the forums I was on.  Of course, Neurontin is probably a similar experience and I’m not getting off of that.  It’s very hot….or will be later.  The humidity might be making the pain worse.

Pam goes in for her surgery on Friday, the 5th.   She said she’d be out four weeks…I hope it all works out for her.  I like Marti, but she’s not as good as Pam.  I think she has some social anxiety issues.  Most people who do this kind of work have as many problems as the people they are helping….maybe not physical, but they struggle.

I had some friends over on the 30th to celebrate my birthday but I was really out of it.  I think it was the Lyrica.  Otherwise, it was great seeing them all.


I just spoke to the pain doc nurse again and admitted to her that I was feeling suicidal for a day or two toward the end of the one month on Lyrica.  She kind of freaked on the phone and said "you didn't tell me that.   Stop it immediately"  And she said it's ridiculous to blame myself; I'm on so much other stuff, who knows about the interactions.  I do have a call into my primary to talk about maybe increasing my happy pill.
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