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Wednesday, June 27, 2012

Upcoming MRI

I’m trying to get to too freaked about my up and coming MRI next week.  I’ve had so many of them; and it used to be no big deal for me.  But now, the pain is so bad I can’t lay there for two freaking hours.  My entire spine and my brain.  I wrote down all the changes since last year and was surprised at how much things have changed.  When I just try to recall I can’t, so I started writing it all down so I’d have a list come next Thursday.

The woman who helps me can’t take me there because she can’t go into the next county.  But the appointment with the neurologist on the 5th is not on a day I use her….but she can do whatever she wants on her day off, so I hired her to take me there…it will be great, because it is someone I know and trust and it’s far better than waiting for a taxi when I’m done.  I’ll pay her more then what she normally makes with me because it’s only for a few hours and worth it for me.  It will cost me about the same as a taxi, and well worth it.

In the meantime, they are re-paving my apartment parking lot.  Had to move my car down by the office in the handicapped space.  Thankfully, I got it because everyone and their mother are looking for somewhere to park.  They are doing it in four separate areas, but still, it’s a pain.  I just hope it doesn’t rain tomorrow because if it’s put off until Monday, I’ll be up the preverbal creek.  My ride to the hospital won’t be able to drive to me to pick me up, and I can’t walk down to meet her….I’m sure we’ll work it out of that happens, but I don’t need the added stress.  Time to meditate.  And drugs.  Yeah, that’ the ticket.

I’ve been very boring lately, haven’t I?


Monday, June 25, 2012

The Last One of My Decade

Well, my birthday was Saturday.  The last of this decade (my decade).  Yikes.  Saw a friend in the evening and got a bunch of nice phone calls.  And another friend came by on Sunday.

So now, after all that excitement, I’m waiting for someone to help me.  My usual person has some week-long training thing this week.  And their paving my parking lot and I have to move my car somewhere…where, I don’t know, and how I’ll get it back (the person helping me today, assuming they will be sending someone else, will help me with it this morning but then it’s anyone’s guess).  I was supposed to see my healer today, but I cancelled it because I have too much to do today.  I hate doing that, but I’m not sure what this other person’s schedule is and it’s a late appointment and I may not finish on time.  Amanda has some flexibility.

I’m really getting worried about my MRI next Monday.   The pain is so bad they are going to do conscious sedation.  I couldn’t even get through my last MRI and I swore the last one would be the last one I ever do, but my neurosurgeon won’t see me until I have a full spine and brain MRI.  I wrote down all my symptoms and how they are changing.  Must remember to bring it with me because I forget.  I have a friend going with me, so I am grateful to her for that!

The sun is actually out this morning….which is good, because they can’t pave unless it’s dry.  And it will take four days.  Four sunny days in Seattle is like asking for a dry monsoon.  Oh well.  I just want to make sure I get my car back from wherever I have to park it.  On the roof, maybe?

Sorry this is so boring.  The pain is so bad I just don’t have the energy to write much more.  Hopefully, I will have better days!!

Friday, June 22, 2012


Amanda, my helper, just left.  She is a darling.  Always smiling, asking me what she can do, doing what I ask….I can’t believe I’ve been managing this long without someone like her.  I feel very, very fortunate to have qualified AND to get someone so perfect.  She has to be gone for a week at the end of the month for some kind of training, but someone else will come (hopefully).  She took me to the store today, vacuumed again, swept the bare floors, and emptied the dishwasher.  And then we sat and talked for a bit before she had to leave.  It was heaven.

I am going to keep pushing myself the best I can; I had thought of sending her to the store without me.  She knows what I like and where everything is in Fred Meyer now.  And we went to the PCC on Wednesday when she took me to my therapist.  But I decided I need to do as much as I can for as long as I can.  Having her next to me for physical support is great but I need to move if possible.  I have enough gastro intestinal problems and moving helps, though for me, not much anymore.  I’m broken inside in so many places it’s too much to count.  Trying to “eat right” to get it going is like giving a carrot to a blind person, hoping it will help him/her see.  My bladder and bowels are neurogenic; they just don’t work.  I wonder how many posts are about this?  Yikes.  Enough, eh?

Well, tomorrow is my birthday.  The last of this decade.  I never thought I’d live this long.  When I look around me and start thinking about all that I’ve missed, I start going into panic mode it’s so overwhelming.  So I can’t.  Think about it, that is.  I have a good friend coming over tomorrow, and another one Sunday.  My nephew told me he’d come by with his girlfriend, who is in town, but we’ll see.  He’s a doll, but I’m sure they have many plans.  I think about how much time I spent with my aunts when I was his age; I loved them so much.  Ruth and Esther.  They were the sisters of my grandmother, Ida.

Ruth was so funny, and Esther a little less.  They lived together after their husbands died.  I remember so many funny stories they told, things they said.  Once, Ruth was opening a package that had come in the mail for her.  It was her birthday, and it was summer.  Summers in Minnesota are the antithesis of winter.  Hot as heck and humid to boot.  Anyway, she opened it up and it had been a box of chocolates, but it was one melted mess of chocolate.  She threw it across the room and declared “What kind of idiot sends chocolate through the mail in the summer!”  She said it not in anger or disgust, but a kind of perplexed sarcasm.  I laughed my head off.  And it wasn’t edible, which was a shame, though now-a-days that kind of chocolate is too sweet and the fillings way, way too sweet.  For me, anyway.

She and Esther argued, told funny stories and entertained me even when Ruth fell and broke her hip.  She must have been in agony, but when I went to see her in the hospital she was telling off color jokes that both made me laugh and surprised me….that she would tell such jokes to me.  Of course, I was 21 or so at the time so in retrospect, it wasn’t a mystery why she shared them with me.  I think she knew we were much alike.  I miss them.  I miss them all.

Feels Like Home to Me
Bonnie Rait/Randy Newman (from Faust)

Wednesday, June 20, 2012

Approaching Pain

The past few days since my dad left have been awful.  The gastrointestinal stuff is at its worse, and I fear I am going to have to pick up a prescription for the dreaded shot (developed for opiate users, it works real fast in getting things flushed out).  NOTHING works anymore.  I lay around all day with hot packs on my belly, slurping Miralax.  Not what I envisioned for myself when I was a kid.  If I had, I wouldn’t be here to tell the tale!   Keep reading, it gets better.

The good news is, I had my first three hours with the person who will be helping me and she’s a lovely young woman who seems filled with joy and a willingness to make my life easier.  I feel very, very fortunate to a) finally admit I needed the help and b) qualifying for it (though I felt like Dorothy from the Wizard of Oz, going back for the broom five times to meet their requirements).  But it worked out, that’s the main thing.

We must be grateful for what we have and for what we don’t have, too.  This is a lesson I must keep learning.  Practicing gratefulness.  You never really get what that means until the challenges come rolling in and the whining starts.  And there is a lot to whine about in this world right now.  But we must resist the urge to complain and look around and what we do have.  For me, it’s a roof over my head, food in my belly (okay, it doesn’t move out, but you know what I mean) and access to medical care not to mention good friends and family.

And we must be ever aware of what works and what doesn’t when negotiating the bumps in the rode.  There was this article in Huffington Post yesterday about a guy called “Bubble Man” in Indonesia who has NF.  I knew by the picture he had it without reading the article, but I did anyway.  They still refer it to the “Elephant Man” disease and that really ticks me off.  Firstly, he had Proteus syndrome (though someone who commented wrote that that was unclear) which was changed in the Library of Congress in ’95, and secondly, it’s insulting.  I wish he had an email address.  I’d send him “Bumps of Beauty” though he might not read English.

While I was lying down (as always) yesterday, trying to get my bowels to move (out damn spot!!) I started thinking about how horrible the pain was at my sister’s get together Saturday and what makes the pain ratchet up and came up with a list.  My sister hasn’t called me since that day.  I think she might be mad at me for attempting to come and taking Ben away from the festivities.  He assured me he would rather have been just with me, but who knows.  It couldn’t be helped.  Anyway, I came up with a list.  Make your own lists of what makes you unhappy or whatever, and what makes it better.  It helps.

Things that make my pain and pulse ratchet up

Pain, Tingling
Family issues
Jaw Tightening
Lack of Sleep
Pressure on Spine (from constipation, tumors)
Feeling left out
Unable to hear well, especially with ambient noise around me

What Helps?

Energy Work
Paying attention to it
Staying away from the Abyss
Staying away from the News

Sunday, June 17, 2012


I seldom go anywhere at all anymore, save the grocery store or to pick up a prescription.  And I’m getting some help a few hours a week starting tomorrow.  But my dad has been in town for my niece’s graduation so I did more than I’m used to, and last night was really bad, physically.  I almost went to the hospital it was so bad.  The pain, the burning, all the way up in my arms, was atrocious.  It was a long drive (I didn’t drive but the ride was difficult) and by the time I got there, it was good just to stand for a few minutes.  And then it started to ratchet up, but I didn’t notice until my nephew took me home when that happened and why.

I am so use to isolation; it’s beyond difficult to be with people, especially a crowd.  The noise is difficult because of my hearing and the noise in my ears.  Ambient noise is really hard for me to deal with. It’s so loud to me I can hardly stand it.  I could not hear the people sitting right next to me; my dad, and two dear friends. I finally went upstairs to lie down, but it was there that I thought I needed to go to the hospital.  I was scared to death.  When I get like that, I often ask myself what I am afraid of, but I could hardly do my little tricks.  My friend Leslie came up and just put a hand on me to help my breathing slow.  And the neuropathy (burning) in my legs and now, my arms, is very bad.  And I've got a knife-like pain in my left hand.  Like the tip of a knife going into it.  Fun stuff.

I felt awful about having Ben take me home, for he had just gotten there a half hour earlier.  He assured me he actually wanted to leave and I believe him because except for NF, we are a lot alike.  He is a dear man, and kept one hand on my leg or held my hand all the way home.  And he stayed and visited for a spell too.  My friend Leslie called later and we talked about what happened.  She notices stuff that, while I am aware of, sometimes I am blind to in the moment.  She said it started getting bad when everyone was talking about how busy their lives are.  I told her that I literally did not hear those conversations, and I didn’t.  And I’ve talked to her about how hard it is for me to hear people talk about their lives.  But being thrown in a group of busy people is very hard, plus I’m use to isolation so there were a lot of contributing factors.  Truth be told, I just wanted to see my dad, and there was almost no time together this trip.  Neither one of us was up to nor able to make the trip to see each other, even though it’s only a 45 minute drive.  A long 45 minutes when you are in pain.

It is so hard to remember to breathe during these times of extra stress.  Yes, the disorder is progressing, and rapidly.  But other things that are a bit ambiguous contribute to the pain as well.  I know that, but it’s putting the brake on that is the challenge. I need to meditate daily, sometimes twice a day, even more if I can.  I need to not get stressed out so easily…and new things make it hard.  Having a stranger come in to help me staring tomorrow will be difficult.  I have a full spinal and brain MRI coming up the second of July and I’m stressing about that (two weeks ahead of time!!  Hey, avoid the rush, right?) which is nuts.  I’m stressed about my digestion and how almost nothing works anymore; will have to resort to the shot (specifically designed for opiate users) soon, and that freaks me out.  I’m over the moon and need to come back down to Earth.  Phew.

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

No truer words have been written.  Realizing what it going on is the most difficult part.

 By the way, if you haven’t seen it, rent or stream “Music Within”  It’s’ an amazing story about the guy who was behind the passage of the American with Disabilities Act.  Very moving.

Thursday, June 14, 2012

The Places You'll Go

I managed to make it (with the help of a good friend) to my niece’s graduation last night.  Being the valedictorian in general studies (and a young man was the valedictorian for religious studies), they each gave a speech.  They were both moving, and Molly’s brought back memories as well as reminders.

She kept quoting from Dr. Seuss’s book “Oh, The Places You’ll Go” and talking about how when her mom read it to her, she didn’t really understand the dichotomy of the tale, but that now she does.  And this morning, I googled it and found the whole thing online.  It really is a great reminder of the ups and downs of life.  One of them is the fact that my dad flew in from Mpls to be here and it’s been tough getting together.  He doesn’t feel all that great, and though he could have gotten a ride to see me today, he, like me, must reserve his energy for the big things…the next one being the party my sister is having for Molly on Saturday.  I did see him for lunch the day after he came in; it’s just frustrating that he’s so close, yet so far.  But that’s life…the ups and downs of life, like Dr. Seuss wrote about.

I needed that reminder, as I get so overwhelmed with my challenges I forget that I am not alone in my fight, nor am I without some good days with good friends and family.  And here’s the thing; when I meditate or just breathe in big, deep breaths, when I remind myself that right now, right this minute, I’m fine and that when I die, the pain will be over (that’s a hopeful guess) and hopefully, I can move on and forward to the next level of whatever.

When I do this, when I ask myself, “what are you afraid of?” it disappears (the stress, the fear) immediately, if not sooner (lol).  Truly, it’s like letting air out of a balloon.  My legs, which cause me so much pain, relax and the pain lessens.  Because I’m not afraid to die.  I’m not suicidal, I’m just not afraid of it.  I am afraid of the “how” of it, but after what I have been through these past 12 years, it seems like there isn't much that could happen that would be worse.  (Dear G-d:  that’s not a challenge.  Don’t even go there).

If you have a few minutes, check out the full text of the book:

Friday, June 8, 2012


I’ve written about my grandmother Ida before but I must have deleted it for some reason.  She is in my thoughts big time right now so I wanted to share a couple things.  One I wrote in the post I deleted, one I did not.

When I was about 11 or12, Ida was dying from bladder cancer.  I didn’t know that, but I knew she was very ill.  One day, my friend Ann and I rode our bicycles over to her apartment to visit.  It wasn’t very far.  She was lying in bed and not feeling well.  I can’t remember who cared for her because her husband had passed away four years earlier.  Anyway, I was patting her arm and saying the things that 11 year olds say, which was “Don’t worry grandma, you’ll be okay” Pat pat.

She turned to me, took my hand and looked me in the eye.  She said “No sweetie, I’m not going to get well.  I’m dying.  But it’s okay, because its part of life and it’s nothing to be afraid of” And she smiled.

Two things happened.  First, I was shocked that an adult would be that honest and open with me, and second, whatever fear I had about death (can’t remember) vanished in an instant.  And I’ve never been afraid since.  It was the greatest gift anyone could have given me up to that point in my life.

When she passed, she willed a diamond out of her engagement ring to me, and one to my sister, to be given to us on our sixtieth birthdays.  (I recall writing this once already but it’s deleted so I’m repeating it).  My folks made mine into a pendant which I wore around my neck non-stop until I was about 22.  I was in the hospital for a chest x-ray and left it in the dressing room, not noticing until it was too late.  It was gone, and I was devastated.  I went home and cried my eyes out for hours.  Then suddenly, out of blue, I felt her presence with me and the words “You don’t need the necklace for me to be near you” came into my left ear (that’s where I hear my higher self “speak” and no, I don’t hear voices….but they are loud thoughts).  A calm came over me and I stopped crying.  And Ida has been by my side ever since.

I keep reading about Aimee Copeland, the young Georgia woman with the flesh eating disease that cost her one leg, the foot of the other leg and her hands.  I can’t even imagine what she is going through.  She’s only 22 and a grad student.  Beautiful, smart and ever faithful.  Her faith is what keeps her going.

There is so much power in prayer and meditation (which I think is a form of prayer).  I had a bad day yesterday, trying to schedule an MRI and an appointment with my doc and coordinating it; I was going crazy.  So I ended up cancelling it all and rescheduling for another time.  It’s just a bad week next week to be doing it and I never should have attempted it.  But fear came over me; my symptoms are worsening and I’m scared.  I am thankful for the help I’ll be getting (if it’s ever approved).  But I need someone with me for that appointment and the people who will be helping me won’t go into the next county, where my appointments are.  So I need a family member or a friend to help because of the drugs they’ll be using to help me through it.  I never needed that kind of help before, but I couldn’t even get through the last MRI due to the pain.

I just hope I can find someone because they won’t let me take a taxi.


Thursday, June 7, 2012


I’m laying here wondering why it is so hard to just be who we are.  Or why it’s hard to be who I am.  Don’t want to point fingers at anyone!  I think it’s because I am so afraid to reveal how terrified I really am of this disorder.  I put up a front, but it’s been breaking down quite a bit lately.  I’m in so much pain, and so ready to see my neurosurgeon again that I didn’t think about the week next week when I made the appointment.  It’s actually the week after next, but as soon as I hung up, I knew they’d call back to tell me I’d need an MRI first.  And two hours later, they did.

So next week is a big one for my family.  My niece graduates high school, my dad will be in town, and I feel so horrible all the time I just don’t know how I’ll make these events and see him as well.  So the MRI was scheduled for next week…a long process because they do the whole spine and my brain (what’s left of it) so it will be two hours and they need to sedate me because the pain is so bad I lay there that long.  They had to stop it last time and I was sobbing my head off when they pulled me out.  So sedation and painkillers will be welcomed.   

Only no one can take me that day.  It’s just a bad week.  So after HOURS of trying to make it work, I had to cancel the whole thing and will start over tomorrow.  They were very, very nice about it, thank heaven.  She was surprised they got me in that fast in the first place (the scheduler/nurse).  I hope I don’t need to reschedule the doc appointment.  I hope they can get me in before the date, because if they can’t I need to reschedule that as well.

In the meantime, the bowels are not working again….on again, off again. I try and work it so on days I have things scheduled I’m more likely to be constipated but these plans are stupid.  They don’t work.  Nothing works in me anymore.  Nothing much works in my anymore.

But, I practice letting it all go, and sometimes I succeed, sometimes not.  I give it up to the Highest Power and it’s like air being let out of a balloon.  I feel it in me instantly.  Wish I could hold onto that all the time.

This life isn’t for the faint of heart.  That Vietnamese man with the 200 pound NF tumors has a smile that stretches across the world.  He amazed me.  I didn’t see the show, but I saw the preview on YouTube or HuffPost or something.  It saddened and encouraged me.  Saddened me that his Lot in life is to be living somewhere that is not equipped to help him, even when it was smaller (the tumor) and encouraged because his strength gives me strength.   I pray that the doctor who is flying there to treat him is successful, and that it does not grow back (it did once already, they often do.) and he lives the rest of his life the happy man he is today, only mobile!


Help on the Way

Well, I dragged myself to the bank yesterday and got what they needed to finish up my application for home health care through COPES (DSHS).  I’m looking forward to the help, and the company.  It just keeps getting worse, so I think I‘m doing this just in time.  Plus, Ted was an inspiration to me.  His upbeat sounding voice made me realize if he can feel good about having the help (and going somewhere he swore he’d never go) than I can, too. My left hand was shaking so bad this morning I could barely hold my cup of yogurt.  Oh well.

I keep reading updates about Aimee Copeland, that 24 year old grad student who contracted that flesh eating disease in May.  She lost a leg, the foot on the other leg and both hands.  So all things considered, I’m lucky.  But I’m also dizzy all the time which scares me.  I need to get in and see my neurologist.  I’m just scared.  Plus, the help I’m getting does not include transportation to my main doctors because it’s in another county.  So I need to work on that.  There are always challenges in life.

My niece and nephew (brother’s kids) came for a visit yesterday.  They are back for the summer, and they brought me lunch and we visited for a few hours.  It was nice.  They are so sweet.  I have been “protecting” them from how bad it’s been but I can’t do it anymore.  I was as upbeat as I can be, but they are old enough to understand how bad it really is and they get it.  My nephew leaves for Southeast Asia in August for four months to study.  We laughed, when recalling how his dad was so terrified he’d be drafted.  But he wasn’t.  Talk about coming full circle.  Thank heaven he isn’t going there to fight.  He spent the month of May in intensive study about neuroscience and philosophy (he's now a confirmed atheist.  After all his years before college going to a religious school.  Figures.  At 21,he's doing exactly what he should be doing.  Questioning.  Actually, we should all do it all the time).  And my niece just got back from a year in Israel, studying.  She goes back to school here in the fall.

Speaking of Southeast Asia; there was this special on the learning channel about a guy in Vietnam with NF.  He has a 200 pound tumor that covers one side of his body. I saw the clip online but don’t get that channel which is good, because I would have watched it and gotten freaked out.  I was freaked out enough watching the clip.

I must work harder on letting go and letting G-d.  Everything is out of my hands, health wise.  I am supposed to have a renal scan today; I cancelled it once, but I’m really not up for it (again).  It’s just a preventative check because I catherize and I know I should, but I have so many more pressing issues.  I need to make an appointment with my neurologist today.



Monday, June 4, 2012


I was approved for long term care in house help by DSHS which will begin soon.  A few hours three days a week and I have to pay a portion of that which amounts to around $250 a month….better than out of pocket direct, but hefty none the same.  AND of course, they can’t drive me from one county to the next so most of my doctor’s visits will still require that I drive or find alternate help.  Oh well.  The other help will be appreciated.

On the way to the dentist to have my permanent crown put in, a DIFFERENT crown fell out.  Literally on the way to the dentist.  Unreal.  And the tooth is so far gone I’m just going to have it extracted.  That will be who knows how much…I’m seeing an oral surgeon in a couple weeks.  Are we having fun yet?  It’s gotten to the point where I’m not even upset about this crap anymore, which I guess is good.  I’m just upset in general.  About everything; my friend Ted, my friend Rosalyn (who just lost her job of over 20 years….three years short of full paid retirement….it burns me up….it’s a long, pathetic story but she’s doing okay.  Already found a part time job in her field).  Then there’s my dad, the economy, and how much I’m costing him.

I haven’t heard from Ted yet and don’t know how to reach him.  I could call his friend again, but I think I need to wait and let him settle in.  His sister is coming to town to help close out his house.  He can’t do anything, of course.  He is so depressed about it he just cries when we talk.

I’m sorry I haven’t been writing and I’m sorry my posts aren’t uplifting.  But I appreciate everyone who has visited me here and will continue to write as much as my soul lets me.


Saturday, June 2, 2012

Endless Opportunities

Well, my friend Ted is going into a Medicaid nursing home.  I’m so sad and depressed about it I could cry.  The poor guy has been to hell and back with his NF.  He’s dying.  I pray for him to be over and done with this, because that is what he wants. Obviously, he never thought he’d live to see this day.

I could list everything wrong with me (and often do) but it pales in comparison (something I preach against doing…comparing) to what he has endured.  This is when I really start asking the tough questions.  Why would someone as sweet, thoughtful and loving as this man be forced to bear this awful disorder?  Or as he says, ghastly.

Who would we be without our challenges?  Do those challenges make us who we are?  Does the way we endure them matter to anyone except ourselves as those who love us?  By that I mean, does it count?  How we endure?  Does it matter to our fractured souls?  And if there is “someplace else” that we go once we die, does how we handle those challenges count toward whatever might happen next? I tire of asking that question, but with all the time on my hands, it comes up a lot.

I seem to keep getting “opportunities” to improve on how I handle things.  On the way to the dentist the other day, to have my permanent crown put on (number four in the past six months), ANOTHER crown fell out.  Part of me wanted to scream, another part laughed at the insanity of it happening on the way to the dentist.  Literally.  This one can’t be fixed, so I’m having it yanked and need to see an oral surgeon because my dentist is afraid she would damage the crown next to it.  IT NEVER ENDS.

My point being, there are always opportunities to do it better.  Handle it better.  With grace, dignity and chocolate.

Please pray for my friend.

"Hello in There" by John Prine
this song isn't just for the elderly
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