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Saturday, September 28, 2013

Power Struggles

I haven’t been keeping this up as much as normal.   I feel drained of things to write about.   Pain, gastro issues….yadda, yadda.  I did see my GI person but it was at a different office, 20 minutes from me.  That’s a long way for me, even as a passenger.  Then they got me in for an ultrasound on my tummy and my bladder, but that was closer to home.  Pam was an absolute doll and stayed way past her time.  She even had another client and called her to make sure it would be okay.  Thankfully, she had no problem with it.  I’ve done that too, on rare occasions.  So, now we shall wait and see.

My pain doc’s nurse promised me my script would go out Tuesday but it’s Saturday and it’s not here.  This happens all the time.  I do have enough to last through Wednesday so it should be fine….IF she actually mailed it.  Once, when she promised me it was “in the mail” she had forgotten to mail it altogether…so five days was wasted tracking it down.  Luckily,  that time I had an appointment there so I just got it then.

I don’t know why she keeps putting me through this.   What difference does it make if she mails it early?  As long as it’s dated for the right time; the pharmacy won’t fill it otherwise.  It’s a power struggle and it’s ridiculous.  I’ve been going there for 15 years; they know me, they know I’m very, very conservative (to the point where they have gotten mad at me for not using my breakthrough meds)….and this time I actually was going to be out of them before the next dose.  And she was unhappy about that, of course. 

I get that they have many patients who do the opposite and who may be abusing and not really in pain…but I’m not one of them and they know it.  I keep getting worse, it would be nice if they would be less strict with me, but she has a way of lecturing and shaming so when she’s in that mode I just let her ramble, agree at the end and hang up.  I mean, she has also been remarkably supportive.  I guess she has many patients who try and pull things so it's an automatic response.   I'm very happy with the team so I guess I need to relax about these things.  When you are in the kind of pain I’m in, you really need to pick your battles or you’re never going to have a less painful day.

I haven’t been sleeping much at all and I never nap so it is getting very irritating.  I always unlock the front door about an hour before Pam gets here so if I don’t want to get up to answer the door, she can let herself in.  Well Friday she had a scare.  She was standing over me saying my name (she said five minutes but that couldn’t have been the case) and was freaking her out because I wasn’t responding.  I had been watching the end of some movie on Netflix (didn’t finish the night before) and I heard my name and kept wondering why the characters in the movie were calling me.  Talk about your deep sleeps!  It was the most restorative few minutes I had in a long time!!

Saturday, September 21, 2013

No Footholds

It never ends.  I started eating avocados for the calories and to get some Potassium and my doctor just called to say my blood work came back and I have high Potassium and need to stay away from things like that.  I also drink coconut water for the electrolytes.  Have to stop that too.  And I don’t even drink that much of it.  I give up.  I have a GI appointment a week from today and I’ll go over it with her.  Again.

Had two days IN A ROW where the pain was doable enough to go out into the world.   Then rain started to come in and it was very ghastly yesterday and kept me up two nights in a row.  Every time I have a “good” day I do thank G-d and at the same time, dread what’s coming.  I’m repeating myself but it’s never ending and I have nothing much to write about.

I did have my eye exam finally….more drops because the Restasis just about killed my eyes.  So drops daily and I go back in three months….but I will get my new improved (hopefully) glasses before then.  Still peeved that they screwed up the first time (the first eye doc, the one standing in for my regular guy who was on vacation, should have caught the dry eye.  That is why the prescription was wrong.  And he said it’s much different now, so we shall see.


Please pray for Ashley, the daughter of a friend of mine with NF.  She has much pain and is very young.  She just had a FIVE HOUR MRI.   Your prayers are most welcomed!!

Thursday, September 12, 2013

Limbo Land

Limbo land is no place to put down roots.  Nothing much here, nothing to interest me anyway.  Which is what makes it limbo.  But limbo is a choice as are most real estate choices.  Not all by a longshot.  But limbo?  Like suffering, it’s a choice.  In fact, it brings suffering to a whole new level of boo hoo.

As I have written many times, pain is something your body does when it wants to warn you that something may be wrong.  And sometimes it just takes off on its own little orbit and never shuts up about what’s wrong.  Even when I scream “There’s nothing I can do about it so shut up!” it doesn’t.  Shut up.  So when it happens for too many days in a row, when the weight I can’t afford to lose keeps dropping off regardless of how much fat I consume (avocados, meat, peanut butter, high fat chocolate), when I start freaking out over it making everything far worse, I see a “Welcome to Limbo” sign and regardless of what direction I go, I always wind up back at that damn sign: Welcome to Limbo.  Land of the lost.  Land of the “I really, truly, don’t know where to turn.”   Boring.  Deadly boring.

When I’m having a “good” handful of hours (not days anymore; ½ days sometimes, but mostly, five or six hours) I feel emotionally more grounded, hungrier (for food and life) and even, dare I write it, hopeful?  Not for a cure or anything as crazy as being free of pain…but hopeful that I will be able to withstand this and make it to the end without lighting the dynamite myself. 

I don’t know why that piece has me by the throat so much.  Cognitively, I see nothing wrong with someone in my situation taking the plunge.  I mean, the pain is uncontrollable, I am in tears much of the time, I drive so rarely my car battery died, I have no appetite, I can do very little without help from Pam or someone else, my eyes are going as well as my hearing so the few things that got me through the day, reading, writing, movies, is vanishing….I must have been a real badass in my former life to withstand this kind of torture (on the torturous days) or a real idiot to believe there is a beforelife, an afterlife, or anything else that isn’t actual life and can’t be proven.  Like the tooth fairy. Or “Second Life,” that online game where you become someone else.  Sigh.

And Saturday is Yom Kippur.  As I wrote in my earlier post, whether or not I make it into the Book of Life for another year will be sealed on Saturday.  It’s already been written.  But there’s time to make a plea to G-d.   I pray everyone I know and love; my nephew and nieces who are now young adults, my brother, sister, their spouses and extended families and every one of my friends have many happy, healthy years ahead.  And Oliver, of course.  Well, he’s got  nine of them but who knows which one he’s on now.

Life’s a kicker, ain’t it?  I do have happy moments…just too much time to think about questions without answers.






Wednesday, September 11, 2013

Falling Chips

Had a doable day yesterday which makes me feel bad about my earlier chat with G-d.  However, I was really making a plea for help….and I got it the last couple days.  Make no mistake, the pain is not gone, but I got out of the house and went shopping with Pam without coming home in agony.

The trick is not to overdo when I’m feeling the pain drop to a “5” because that’s what I always do.  I just take advantage of feeling good and race around for a few hours then come home in tears.  Balance.  I have to go for balance.

It’s is gorgeous here right now but supposed to reach 90 the next couple days.  Way too hot for me but the blue skies and sunshine make for a better mental state.  Unless the pain blows up.  But, let’s not go there.

I had an appointment with a naturopath to talk about eating options but I cancelled it.  I should re-schedule, I know.  I don’t get what’s going on with me but I am not sure a naturopath can help.  I’m eating well, I’m getting the calories but I’m not gaining an ounce.  My theory is I’m burning way more calories than I think I am; the kind of pain I’m in takes a lot of energy out of me which is why those calories get burned.  I can’t do a darn thing about that…and if I eat too much?  Back on the constipation merry go round.

So I am going to just let it go and accept it.   When I’m not in pain, I eat a lot.  When I am in pain, I have to force myself to eat anything.  I tried Ensure again and it upset my stomach, even though it was supposed to be lactose free.  But I may keep drinking them.  Worrying about all this is another way I lose weight.  Stress can cause you to gain or to lose, and for me, it’s the latter.

I see all these ads for weight loss but not once have I seen a weight gain product or food delivery offer, and hundreds of thousands of people need to gain weight for the same reasons I do.  Ensure can’t be the only choice.  I mean, there are a lot of protein body building products as well, but all seem to have lactose, dairy, whey…things that back me up.  Sigh.


Letting go and letting the chips fall where they may seems the best thing to do.  Worrying solves nothing.

Cannot believe it's been 12 years.....



Friday, September 6, 2013

A Mensch

I am in profound agony at the moment.  I had to go to the urologist today and it did me in.  My feet are killing me….like having them stuck in hot moving sand.  I talk to G-d all the time as well as my my “helpers” on the other side …those that I loved that went before me.  I’ve been lying here begging for help.  Also, I was worried about my friend Jan who has NF and who I email back and forth with.  She went into the hospital last week and five days later, I still hadn’t heard.  She finally wrote back.  She had an undiagnosed uti and kidney issues.  Like Ted, Pam and I, her experience with hospital stays aren’t good.   Richest country in the world and the healthcare is often subhuman. 

It’s Rosh Hashanah (the Jewish New Year) and I will or will not be written in the Book of Life over the next eight days (its 10 total).   Written now, sealed on Yom Kippur.  Or so the story goes.  Anyway, this is the only time it’s okay to make a personal plea to G-d (for yourself).   I don’t remember the reasons around that law, but I can guess.  It’s always better, wiser, more mensch like (a mensch is a doer of good deeds….one with an open, loving heart who would rather visit the elderly than go to a movie…that kind of person) to pray for other people.  Oh sure, if you are dying and want to live, or as in my case, your living but want to die, you can ask.  Just save it for these, the 10 days of Awe, as they are called.

Well here goes: G-d,  I have been trying as hard as possible my whole life, and especially that last 15 years, to practice loving kindness, goodness and all that is right with being human.  But I fail.  I get up each morning and do my routine.  I try not to worry about the little things that come with the very big things that are wrong with me.  I try not to compare myself to others, I try to be happy for my friends who do well, I adore my nieces and nephew, my brother, sister and their spouses and of course, my dad.   My brave, strong, role model dad who deals with the pain of spinal stenos at age 89.  I’m guessing he feels like cashing in too, on occasion.  Still, he soldiers on.  Like the soldier he was in WWII.  But I have never been, nor will I ever be, such a soldier.  I am flawed beyond measure.  I have wanted out for far longer than I’m willing to admit to here, but You know.
So during these 10 days, I am praying for release from  this tyranny of the tumors.  Sorry, a bad attempt at levity.  But levity is hard to find these days.  Amen. 

Okay, got that out of my system.  Now i need to ground myself, if possible.  And trust.  Be Still and Know.



Tuesday, September 3, 2013

Back Down

I have been getting little relief and a lot of dizziness with the increase in Fentanyl so I talked to the nurse and I took the 25 mg patch off for now.  Maybe I’ll try again another time, maybe I’ll just use them as back up (I’d need all four) if my 100 mg doesn’t come on time.  My depression suddenly skyrocketed too.  And it takes 18 hours to exit the body (the Fentanyl).  I don’t know what I’m going to do.  I may need to be re-evaluated.  Again.  I know it’s only been a week since the increase, but I know dizziness, depression and lack of relief when I experience it.


All I know is I feel like I did when I was going off methadone.  I’m beyond uncomfortable, I can’t get settled in any position; up, down, makes no difference.  I’m cold on the inside.  The only change was the increase so that has to be what it is.  And then there’s the pain.  Stay tuned.
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