Welcome and thanks for visiting me here! If you are new to this blog, start with "Bumps of Beauty" and other earlier pieces. "The desire for freedom, as it motivates us to our
natural state is great joy;
The desire to be free from the way things are is great suffering" (Stephen Levine)You can email me at email@example.com
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The days of pulling myself out of the quagmire of pain feel
relentless, each foot threatening to lead the next astray as I forge, then
tiptoe, on ahead. Astray from what I do
not know. One or two tolerable days and
bam! I’m in for weeks on end of endless
torture. Asking myself “how much more”
is futile yet seemingly, unavoidable. I’m trying to out of my head and stay away
from the fear, but when the pain hits the fan like this….it’s near impossible.
I did get a call from a Reiki guy who does it long distance. The last time, I felt my own hands grow warm
as I put them in the appropriate positions (I have a level one Reiki
certificate though I never do it. Level
one means you can do it on yourself) and felt relief almost instantly. Then again, I was in bed and almost asleep.
Although it’s not warm, the humidity is high, and low
pressure always makes the pain worse.
But I doubt moving to a dry climate would help, given all my support
systems are here in rainy Seattle. So I
watch my hummingbirds live and my eagles per Webcam, reading, listening to
music, watching movies, writing and trying not to …whatever.
Today the neuropathy has me by the short hairs. It’s been that way for over a week. Trying to eat and stay hydrated but it’s hard
to remember to do so when it’s like this.
Then I read about people who have challenges even greater than mine and
I spin downward. Yikes. I hate this and I hate that all my entries
are so negative. I go back and read some
of more positive ones, back when I had enough “good” days to manage a positive
Two of my three nieces were just here for a visit; that
always cheers me up! Listening to their
college stories and forcing them to listen to my antics back in the day…a
gazillion years ago! We laugh. It helps.
And I just read a recipe for chocolate pudding made with avocadoes. One of my helpers got me all the ingredients
but the avocadoes aren’t quite ripe so we’ll try for tomorrow to make it. Actually, I’m not a pudding person but it
should be high in calories, which I need, so worth a shot. Here it is, if you want it:
1/2 c. unsweetened cocoa powder
2 ripe avocados, pitted and peeled
1/4 c. skim milk
1 tsp. instant coffee or espresso
6 Tbsp. honey
1 tsp. vanilla extract
Orange zest, for garnish
Toasted coconut flakes, for garnish
Flaky sea salt, for garnish
Put avocados, honey, skim milk,
cocoa powder, instant coffee and vanilla extract in a food processor. Blend
Scoop pudding mix into a glass bowl
and cover tightly with plastic wrap. Chill in the refrigerator for at least 30
minutes (up to overnight).
Once chilled, spoon into four bowls
and garnish with toasted coconut, orange zest and sea salt.
Words have been stuck precariously in my head, wanting to
escape but unsure of where the exit lies.
Putting those words together has become more and more difficult as my
need for painkillers grows. I use way,
way less than the “recommended” amount; the side effects are too daunting and
miserable to contend with so I make YouTube videos instead. That is daunting as well and I have yet to
figure out how to draw in viewers or even if they are worth viewing in the
first place. Like this blog, I’m really
only interested in having people with NF or other painful disorders read/view
what I put out there. And friends and
family of those who are dealing with the situation, in an attempt to have them
better understand what the challenges are for us.
I did this latest one because I was having a day from hell
and wanted people to understand that all the “tricks” in my book on pain
control sometimes fall short, or fall not at all. None of them are polished in any way. But I never thought of myself as a Steven
Spielberg or Robert Altman or anyone else behind the lens of a camera. It’s an iPad, for heaven sake. One funny thing happened to me on the
journey; I was watching a movie on Netflix and there was a scene with a
character trying to make a video using her smart phone. But it had the iPad video technology and when
she was done with her little bit, she could not get it to stop recording. That happened to me more than once and I had
to do the whole thing again because I couldn’t figure out how to “trim” the
last few seconds out and ended up deleting the whole thing. Funny.
Or not.....here's another.
While having a genetic disorder like NF can make you feel
profoundly different from your friends and loved ones, I think my feeling of
being different goes a lot deeper. I
don’t remember ever feeling like I belonged: I’m talking as a youngster, under
the age of eight, long before being diagnosed and much longer than
understanding what it was I had. I have
always felt a disconnect; like a ghost.
But it wasn’t coming from any outward experiences such as family. I had a loving, though far from perfect, childhood.
An angry father, a sad mother, yadda yadda.
But I never was abused in any way.
No, what it is, and please don’t laugh. Okay, you can laugh. What it is, is a feeling that I don’t belong
on this planet. I have never felt at “home” anywhere, though
when I moved to Seattle from Mpls, I remember crossing the I-90 thinking “I’m
home” But in a short while, although I love
Seattle and would never go back to Mpls, it still didn’t feel quite right. So the feeling of not belonging on Earth came
I always keep it tamped down. I don’t dwell on it unless the pain is
through the roof. And then I just pray I
can go Home, wherever that is. But
sometimes, when watching documentaries about whether or not life exists
elsewhere (of course it does), I feel cheated.
I ask why, why was I sent here and by whom? But it’s like praying. No one (usually) gives you an answer or it’s
not the answer you want. So maybe it’s
all the same thing. Wanting to go Home,
wanting to go back, wanting, wanting, wanting.
Never any good, the wanting. Just
makes the pain worse. Concentrate on
There is so much we don’t know. We look for life elsewhere, but of course, we
think of life, and the “ability to support life”(as we know it) is the same
wherever they are in the universe, but we know nothing. Just because we are carbon based and need
liquid water for life, doesn’t mean those “out there” are sustained in the same
manner. For all we know, mercury
sustains our distant neighbors. Nothing
faster than the speed of light? That’s
what we know to be true. Now. We know nothing.
And maybe, in the end, my feelings of not belonging are
indeed the result of having this genetic disorder that leaves me in knock me
off my feet in pain more days than not.
On “5” days, like this one (pain a 5 on the 1-10 scale) I can feel kind
of normal, whatever that is. But on days
where I have to do everything and anything to “get out of my body” (when I
meditate or find some other way to quiet my nerves both physical and spiritual)
is when I feel it the most. When I want
to go Home the most. And I know everyone
who has heavy challenges, whatever they are, feel the same way. It just feels to me deeper than that. Like I actually left something behind
somewhere. Like I’m being tested; maybe
from a higher power, maybe from a different kind of power. Who can say, eh?
All I know is I’m ready to move on. But whatever is on the other side, is not
ready for me to do that, so here I shall stay.
Until providence tells me it’s time.
As you can see by my YouTube “promo”, I’ve been figuring out a few things about how
to upload from my iPad. I can upload
from my PC, but I can’t make videos there and don’t have a “smart” phone. I refuse to have a phone that’s smarter than
me. The PC and iPad already get credit
My new pain protocol isn’t exactly something to write home
about. There are the tolerable days and
the days from hell. Unless I stop moving
all together, it’s usually the latter.
But if I’m feeling at all like I can move, I do. I mean out of the house kind of
movement. But I pay for it big time the
next few days.
I got a new showerhead and a shower bench. The bench isn’t right for my tub and I need a
different one. The showerhead doesn’t
attach correctly and I have to hold it which is difficult and awkward. I have a call in to the maintenance guy who
installed it. He said the parts didn’t
work right with it, but I think he did something wrong. Maria, my aide, said the bench was far too
big for me and her other client, who weighs a lot more than me (everyone does)
has a smaller one. So I put a call into
my caseworker. It took over a month to
get the first one. Sigh.
Sometimes, the challenges so overwhelm me. And as much as I like the sounds, feel and
smells of summer, almost everyone in my life goes out of town for weeks at a
time. My brother and his wife will be
gone for a good part of the summer as will my sister and her husband. And several of my friends, too. I’m very happy I have the help I do or I’d be
The food service I use to bring me meals once a week (enough
for four meals) is great and the food wonderful. If not for them, I’d eat even less then I
have been. I just don’t have the energy
or interest in food anymore. But I do
like watching the eaglets eat! They’ve
gotten so big in such a short time.
Man, it’s been a long time since I posted anything. I’ve been out of the hospital and home for a
month already. I even got to see my
acupuncturist last Monday….hadn’t been to see her for two whole months and I
could tell. Even though it only grazes the
pain (like everything else I’ve tried), it helps with other general things and
lightens me a bit…you have to be grateful for what is right in front of you,
All the eaglets hatched from the Decorah Eagles site that I
so love. They hatched a few days apart
and they are a little over a week old.
Already growing so fast. Eat,
chatter, sleep. And the parents are such
good ones….it’s impossible not to watch, laugh, and realize how fragile and
beautiful life is. I am watching them in
another window as I write this….they relieve each other of parental duties;
they still cozy on over them to keep them warm because they can’t regulate
their own body temperatures for the first two weeks. This is my second year following them and I
learn so much every day. Visit them at: http://www.ustream.tv/decoraheagles and sign on (no obligations or cost) so you
can watch the “chat” and learn. You
don’t have to participate, but if you have a question, you’ll get an answer in
a very short time from one of their many volunteer moderators. I stay away from social network sites, but
this one is a major learning experience, it’s respectful, and the mods do a
great job of keeping it family friendly….kids watch with their teachers and
classrooms. And the panning and camera
work, also done by volunteers, is amazing.
I have more screenshots then I’ll ever use! And the hummingbirds drink so much I change the feeder daily!
The pain has been pretty much unbearable for days on end,
but today, I got out for the third time in two months (that wasn’t a doctor
appointment) and went to the bank and to get some more of my probiotic
stuff. I take so many supplements it’s
ridiculous. But I hope that it balances
out all the yucky stuff I have to take.
And something is wrong with my very expensive air bed. I wake up in the middle of the night and it’s
so deflated it’s like sleeping on a wooden pallet. My helpers and I have looked and looked (and
listened) for a leak but we can’t see or hear anything. It’s maddening. I have enough trouble sleeping without
this. My brother though I should go and
get a regular mattress and maybe I should.
I like the air one, though, and I have a mattress topper that is really
fluffy and cozy. It’s a mystery. But it feels horrible because I am so thin
and the tumors are everywhere so it hurts…everywhere.
I am also adjusting to my new/old regiment and taking the
drug I hate. But I hate all of them, as
they do little or no good whatsoever. I
started thinking of all the things I’ve survived that should have killed me
from scarlet fever, NF to near drowning to cancelling a trip on a 18 seat
plane, only to hear it had crashed and killed everyone on board. Makes me think. Actually, throws me around between total
confusion (as to why I am still breathing) to laughing my head off. G-d has a sense of humor, I’ll give you that.
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
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.
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
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.
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
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
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
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
I’m just trying to hang on here. Coping.
Sometimes it works, sometimes, not so much.