Eleven

When I was 11 years old my paternal grandmother was sick with bladder cancer (though at the time I didn’t know why she was ill).  One day, a friend and I rode our bicycles to her apartment, which wasn’t far.  I was in her bedroom, patting her on the shoulder and telling her she was going to be alright, the way I had seen grown-ups do it.  What happened next astounded me.

She held my hands, looked me in the eye and said “No sweetie, I’m not.  I’m dying.  And that’s okay because it’s all a part of life.  I don’t ever want you to be afraid of it”

I don’t think I breathed for five minutes.  I was afraid and unsure of what I heard.  But it wasn’t death that frightened me.  I was wondering why my grandmother, whom I was especially close to, would talk to me like I was a grown-up.   Nobody talked to me like that.  This was 1964.  It frightened me because I knew she told me this for a special reason, I just didn’t know what it was.

As time moved on, and especially now, I have a deeper understanding of why she shared that with me.  I was diagnosed with NF at age 11.  I don’t know if my grandmother knew specifically about the diagnosis, or if she just sensed I was different.  I was sick a lot as a kid, much of it before age 11.  So she saw those illnesses and maybe she sensed my physical being would be challenged during my lifetime.  Not much was known about NF back then anyway; it wasn’t even called NF.  So who knows what she knew.  She was sensitive in ways not recognized back then and even now, for some people.

I’m thinking of that now because I’m re-reading books on the soul, as well as ones I haven’t yet read.  I’m recalling experiences I have had with the other side and telling myself that there is no way they can’t be real.  My experience with helping that woman cross over comes to mind (I wrote about it on this blog…”First Encounter” I think I called it) as well as some other unworldly things that I know was not “swamp gas” (no UFO sightings, just an expression).  These experiences all happened 20 years prior to me needing the drugs I use for pain today.  Now, I don’t have them anymore.  The drugs surpresss whatever gift I had.  Not entirely, but enough.

As my NF progresses and it seems to do so daily, I feel life kind of closing in on me and I get scared.  And if I’m lucky enough to feel her, my grandmother soothes my fractured heart, my frightened mind and my sore body as she says “…it’s a part of life and I don’t want you to ever be afraid”

The pain is so very bad lately, all I want is to go HOME

I'm Back

Okay, I’m back.  Lots of pain today, CBD hasn’t done much of anything though I got some weed high in CBD and that seems to help.  It just needs to be delivered by smoking it, unfortunately.

The CBD oil I ordered is brown and thick and kind of gross.  I’ve tried putting it under my tongue like it’s suggested….but my lips and teeth turn greenish brown and when I brush my teeth, the stain gets on my toothbrush.  It seems to work okay if the pain is kind of middle of the road…if I need to go out I like to dose up (when I’m not the one driving)   I just tried it again.  It’s pretty yukky but if it works, who cares?

I called the library to ask about bookmobiles and it turns out they actually deliver books and CD’s and DVD’s right to your door!  Once a month, Books on Wheels will come by with the requested items, which I have always done online.  But getting to the library when the item beomes available is a challenge and of course, I need to watch the mileage each month.  So I am grateful for this new development.

I need to renew my license plate tags and this year, emissions testing.  Not quite sure how I will manage that.  And, because I seldom drive, it might not pass the emissions test.  Sigh.

For the first time in a while, I didn’t watch much of the Olympics.  I was so turned off of ice skating by the way they chose the team (one person skated better than the one who went) that I am no longer interested.  I ice skating has been losing a lot of ground because it’s very subjective; even if someone falls they get a pass if the audience likes them.

Vinnie and I are still together though the sometimes monster (biting, torn down a curtain rod with curtain in my bedroom, knocking things over constantly) is definitely on probation.  We shall see.

I pray your pain is manageable and you trip here is a happy one, in spite of, or perhaps because of, our challenges.

CBD Bust

Well, the CBD is a bust so far.  Big surprise.  My pain receptors are full and opioids do nothing so I thought a back door approach might work.  Will use what I have left, but the pain is just getting worse and worse.  It doesn’t help that a 10 pound cat loves to sleep right on my legs.  I told him he could only sleep there is he would heal me.  And he’s a whirling dervish in the mornings. Knocking things over and breaking a few.  If anyone wants him….(kidding…sort of)

I have been going over my wishes for after I die with my family.  Still working on a backup plan if the bio storage thing that CTF is supposedly putting together isn’t up and running.   I have a call in to the pain clinic at the U to ask them if they have a body donation program.  I just want it to be for NF research and nothing more.  And before that happens, I want the traditional Jewish way of watching over the body after the soul exits, for three days (loved ones take turns).

It’s difficult to have these conversations, but necessary.  I encourage you to have them with your families, whether or not you are ill, because you just never know what is going to happen and you don’t want your loved ones and or friends wondering what you would have wanted.  Part of me just doesn’t care, but I did put a few things together besides what to do with my body.

I’m not sure how much longer I can do this (the blog).  I will try, but it’s been getting harder and harder because of the pain and my mental and emotional health.   But I’ve enjoyed doing it and it has kept me somewhat sane.  If I don’t write anymore, I thank you all for reading and I hope it’s helped you sometimes, in some ways.  We shall see….

BioStorage

I’ve been looking at end-of-life decisions lately.  My dad, who will be 90 next month, has been going over everything he wants with my brother and sister.  I’m not involved because I can’t be there physically. Which means I won’t be able to say goodbye to my dad at a gathering of any kind.  And, he wants to be buried next to our mother, of course, in MN.   We now live in WA state.  This stuff is so hard for me.  My dad and I have gotten real close over the last 20 years or so….maybe a lot longer.  We talk daily.  I know that it’s more important to have a good relationship than it is to just be at someone’s funeral, especially if you are carrying regrets.  And a little piece of me has already made peace with it.  Still.

Anyway….I’ve been planning everything for myself in my head for a long time and I finally wrote much of it down.  One of the hardest questions to answer, one that my brother asked me, was “what my wishes are” for after I die.  I’ve got everything in place for before I die in terms of living wills, power of attorney and DNR,  but what about after?

And what about after, anyway?  Being put in the ground never really appealed to me…probably an irrational fear of not really being dead.  And being cremated REALLY doesn’t appeal to me.  I’ve been thinking seriously about donating my body to NF research.  So I emailed them.  I’m already in the NF Registry, which is a great thing to do in the event that some kind of research or clinical trials start because then they have a data base filled with potential lab rats like me.  And if I qualify (who knows if it works in reality; in theory, its great) for one of those trials, they have all the information without me having to be aware of a trial….they would contact me.

So I emailed them about body donation and they wrote right back telling me that as it happens, they are in the middle of organizing a “BioStorage” system.  She wrote that they get occasional requests for this so that’s why they are working on it.  I can’t believe they haven’t before….I mean, what is research if you don’t have the bodies to look over forensically?   I just don’t want to end up on an autopsy table for first year medical students.   Not that they don’t need bodies as well, for obviously they do, but I lived the whole of my life battling this disorder and if they can find one tiny little clue that may help someone else with NF….I’d like to be able to help.

The way I figure it is that I’ll be done with my body and G-d will be caring for my soul.  Why not?  Of course, the same fear of “really” being dead applies!

CBD

I’ve been investigating cannabis oil with cbd, which is not the same as thc, the ingredient in pot that makes you high.   There has been lots of talk lately about cannabis oil with cbd, which has been proven to end seizures and help with chronic pain and a host of other things.  Without making you high or even tired or goofy.

I had some weed that had more of the cbd in it and it was great.  It really helped with the pain and did not make me “high”.   But I’m having a hard time finding it.  I haven’t even gone into a marijuana dispensary yet because it is too damn hard to find them and to get there.

It is profoundly frustrating when our government continues to consider cannabis as something worse than shooting heroin, or just as bad.  Of course, if people actually started to improve, what would become of “medicine” and the doctors who treat us?  Scientists have been trying to “cure” us for many lifetimes, but every time they come up with a possible solution, it is shot down.  Think of all the out of work doctors, nurses and other health care professionals if the answers to the most perplexing questions were actually solved.  Makes you think.  The pharmaceutical companies would rather poison us with man-made copies of the real thing.  And charging a lot more.

The pain has been horrific these days.  Can barely go out the damn door.  Lately the pain has been like withdrawal symptoms; legs jerking around and folding inward, toes curling.  I am willing to try anything, even if it kills me.  Because I can’t stand much more of this life.

I try, I really do.  I think about what my purpose here on Earth is; I try to understand what it is that I am missing in terms of that purpose, and whether or not I am just avoiding some of the bigger questions.   But the pain keeps me from considering much of anything these days.

And then, for one or two days, I think I have my gastro issues in check….but I’m losing weight again and there isn’t much I can do about it.  I eat.  I eat all through the day, small amounts.  But pain burns adrenaline which burns calories so keeping it on is impossible.   I cannot tolerate any of the drinks with the added calories.

I’m so ambivalent about being alive, I’m sure that’s the crux of the whole thing.

Push

The tumors in my left leg are killing me.  I had at least two things I wanted to get done today but had to ax both of them.  I hope tomorrow is better because I actually have four things that need to get done and I was going for two in a day….last week I had something every day of the week.  This week….moving is not going to happen.  That’s what happens if I push too hard, like I did last week.

Vinnie, my kitty from…not sure where, is getting into everything now that he’s feeling his new “home” is safe to explore.  He was sitting in the fireplace this morning.  Luckily, I haven’t had any fires so far this season so it’s clean.  Just what I need; ash paw prints everywhere.

I’m thinking of calling my pain doc to get the name of a surgeon he had told me about a while back.  I just HATE having to see doctors, especially new ones that don’t know anything about me or my limitations due to the pain.  They just don’t get that I can’t sit for 30 minutes waiting for them to call me.   And getting there is always a challenge because my helpers can’t take me because it’s in a different county.  I’m on the border and they can’t cross over.  Some will do it anyway and report the miles but not that it was out of county.  These two won’t do that.

Wednesday:  made it to two stores, sent Hamid, my helper, to get my meds.  It’s pathetic, really.  My life feels pathetically worthless sometimes.  When I’m deep in the abyss, like I am now, I feel nothing but contempt for this world and my being in it.  It’s very hard to stay focused and positive when all my available energy goes to dealing with the pain.  Overcoming, ignoring, praying, meditating…

And the list goes while the fist goes up as I shake it at the stars that won’t move, not for me, not for anyone, not even for themselves.

I’ve been wondering about something a lot lately.  I doze on and off during the day; not sleeping but going unconscious for a few seconds or a few minutes at most.  Sometimes my brain is aware that I’ve slipped away and it becomes an out of body experience.  Everything is different for those few minutes and when I come out of it, it’s not like waking from sleep.  It’s like coming back from somewhere else.  Somewhere I can’t stay.  Not yet, anyway.  I used to have lucid dreams all the time.  Before the pills so if anyone thinks my experiences with the dead and with lucid dreaming aren’t real because of the drugs, remember it’s the drugs that killed the ability.  I never took so much as an aspirin during those years.  Maybe the skill is trying to make a comeback.

If you’re breathing, you have to keep pushing.  Those are the rules.  Damn.

Control

Control.  We all want it or think we have it.  But in reality, the only control we have is how much orange juice to pour into our glass.  And maybe not even that, given the butterfly effect.  Sigh.

I was thinking of this because while in mind-numbing pain of late, my brain goes in many directions or sometimes, in one.  And lately I have been obsessing about that case I mentioned in the post below.  No names needed.  Anyway, I was thinking about the child’s mother, and how overwhelmed she must be (to say it lightly) with everyone from lawyers to doctors to the press and the public in general.  I do not envy her her situation.  But mostly, I do not envy her for the terrible blow that has landed on her poor soul.

And I ask myself this question.  Has anyone in her life ever taken her aside, shut all doors and just ask her to tell her/him about her daughter?   No mention of tonsils, illness, hospitals, lawyers or anything that led to this horror.   Just talk with her about her beautiful daughter with the infectious smile.   Omit nothing, Have her share everything she meant to her, still means and what she had planned for herself.  Let her talk herself blue in the face, but interrupt any mention of the issues that have grabbed on and won’t let go. 

Because in the opinion, and it is only that, comes from someone that, like most people on this planet, knows deep grief of her own, though not the loss of a child,.   For me, grieving could not begin until the clouds parted and I saw my life for what it is.   Filled with intractable, non-stop physical pain as well as tons of love .For her, she must begin to see that her daughter has most likely moved on.  If not, and if you believe in such things, she too is grieving.  For her mom.   But this should not be mentioned.  No guiling, no lecturing, no comparing who is right and who is wrong (because we do not know and I doubt we will ever know much of anything though we think we do) and no talk of anything except her daughter.  The one she will love for the rest of her life.  She also has another daughter who needs her.  I cannot begin to imagine what she must be feeling.  But part of it might be some serious questions.

There was this great line toward the end of that movie “Phenomenon” with John Travolta.  He had this experience that everyone thought meant he was visited by something from outside our solar system.  In truth, he had a tumor that caused the change in him.  He of course, fell in love, and just before he died he asked the woman if she would love him for the rest of his life.  “No,” she replied “I’ll love you for the rest of mine”

Grace

Oh man, the pain has been so out of this world I can hardly breathe.  I think that losing Oliver is still hitting me over the head and hard.  I love Vinnie and he is the sweetest cat ever with lots of kitty still in him.  And I do think Oliver sent him to me but I am frightened now of the level of pain and whether I can deal with him long term.  Right now he is eating me out of house and home.    I just thought Oliver would want me to rescue another cat, like I rescued him.  And like we rescued each other.  I just thought Oliver would want me to rescue another cat, like I rescued him.  And like we rescued each other.

I’ve been thinking about all my challenges and how the worse it gets, the more opportunity to grow spiritually and show grace and dignity.  I’m at about 30% in the grace and dignity department.    And my computer is going haywire…having a hard time writing this.  Yet another opportunity!   I do not now, nor I have ever thought I had more or harder challenges than anyone else.  I am lucky in so many respects I feel ashamed to complain at all.  And yet.  But whether the challenge is ours, personally, or whether it involves a loved one, it’s all the same.  Rising to the occasion.  I just want to rise out of here sometimes!

I have been following that story about the young girl who died (brain dead) after surgery.  I had not understood the difference between coma and brain dead until now.  That poor child is not coming back to this world from what I understand about it now.   Her mother can’t let her go and removed her from the hospital (legal battles will continue I am sure) and found a place through a lawyer (of course) who took her.  Feeding tube, breathing tube, dead body.  The brain is what tells the body what to do…apparently; in addition to telling me to breathe it tells me to grow tumors.  But I digress.

I feel for her mom, I really do.  And what do we know, really, about what is to come?  Nothing.  We know nothing.  I read that her case will not set a precedent; they released her on the condition that it read they were releasing a corpse.  This is so sad it hurts me to read and write about it.   I do so because again, our challenges are for us.  That little girl is done with her challenges on Earth.  Her mother is not.  I pray she can let her daughter go.  She will have to, and soon.  I just want her to be at peace.

And Here Comes....Vinnie!

Just a short hello from the guy Oliver sent to me....his name is Vinnie and he's exploring and yelling and eating and playing and even got into my lap long enough for me to snap this picture.   He loves catnip (and I'm almost out) and he discovered the hummingbirds.  He has a strange vocalization....like a smoker.  Gravel.

Oliver is still by my side....helping me help the two year old Vinnie.  Oh, they estimate his DOB to be /January 4, 2012 so he just turned two...of course, that's a guesstiment.

I really needed this heartbeat.   And I was mourning Oliver for a long time before he passed.  He has helped me through so much.   Vinnie is about to knock over a lamp.  What have I done!!!!!

lol

Vinnie

Truth be told, I’d been preparing myself mentally for Oliver’s passing for a long time….at least a couple of months.  I felt it in my bones.  While he ate normally, he slept more and was rail thin, kind of like me.  The more he ate, the more he seemed to lose.  And he groomed himself non-stop, though I will never know why.  I write this because a woman who works for a shelter was in touch with me about a cat I was interested in.  The cat was being fostered, and the rules around that are even stranger than the rules around adoption, which I’ll explain.  At any rate, I explained about my mobility limitations without drama or any mention of NF.

I know how selfish this must sound; being ill and needing help I probably shouldn't adopt another animal....I actually told myself Oliver would be the last.....I just loved him so much and feel I still have it to give another abandoned kitty.

 Of course she didn’t understand when I said pain made it hard for me to travel.  I requested that she email pictures of cats that meet my qualifications, and when there was a fit, perhaps instead of taking me there (which they have to do; you can’t just go to someone’s home who is fostering…you must be escorted) that she bring the cat to me and I’d pay cash.  But she shot it down because they have to see if we bond.  I understand that.  Should bring super glue with me next time.  Anyway, she told me I “wasn’t done grieving” and I just thanked her and let it go.

So a good email friend of mine named Carolyn reminded me that I had been grieving for months and his death was the end of most of that grief.  Except of course, for the emptiness.  Cat lady couldn’t have known that, although to her credit, she visited my blog because it’s at the bottom of my email.  I never mentioned it to her.  We agreed to wait, though I just kept on looking and today, visiting, potential matches.  It’s like dating.  Anyway, it would require too much energy to explain and no need, and I don’t want to be on a soapbox.  She was doing what she thought was right, and she was doing her job well and I respect that.  She was just wrong about me.  But that’s okay; I can’t let those things upset me, especially when I’m in the kind of pain I’ve been in recently.  Today was awful, pain wise.

However, friend- wise and cat wise it was a pretty good day!  A friend called to say today was “Kitty Day” and she was coming over to schlep me to the shelter!  She had promised that the day Oliver passed, but I must have forgotten.  And she is the one who brought me a big stuffed bear; another friend brought me a cute stuffed kitty.  I am blessed.

So she comes over, we go there and I had a few cats in mind that I so online  None of those were available for some reason, but suddenly I saw this adorable black and white cat who was a little young (2) and not quite ready for adoption.  He’s being fixed on Monday and will be available Tuesday.  But here’s the thing.  I could fill out the paperwork, but not put a hold on Vinnie (his name).  You can’t do that until they are deemed “adoptable” which should be Tuesday.  But I have to get back there and spend time bonding with him before I can either adopt him or put him on hold for 24 hours.  I explained my mobility issues but it doesn’t matter.

My problem is their hours.  They open at 11 and you have to have the adoption done by 3:30 because they close at 4.   My helpers leave at 12 (well, Tuesday and Thursday I have until 1 but technically, they aren’t supposed to help me with my pet…don’t even ask).  And of course, my friends all work.  I got another offer for a ride from a friend of a friend, so I’m hoping that still stands and it will be a go by Tuesday or Wednesday.  But without the hold, which I can’t get until I’ve bonded with him, anyone else could pop in before me and adopt him.  It’s twisted.  They wrote that I was “interested” on his paperwork, but that means nothing.

I’m hoping for the best.  One way or another, I’ll have a cat soon, I hope.  It was hard because part of me wanted to keep looking when I heard I could not take him today.  But then I realized that if Vinnie is the one, I should do everything I can to adopt him.  No pics yet; don’t know when, I don’t own a camera.  However, my home is kitty ready….litter, food, new carrier, new litter box….I hope its Vinnie and I hope he’s happy here.  And I hope I’m doing the right thing.

I “asked” Oliver and he gave me four paws up!  I still worry I may be taking on too much.  But I need the companionship and my dad is really encouraging me to forge ahead.  He’s a wise man.

Hopefully, I’ll know more soon.  I still see Oliver around the corner and out of the corner of my eyes.  I’m waiting to find a big depression on my side of the bed where he liked to sleep (which I solved by putting pillows there) but I moved them back where pillows belong, hoping to see a glimpse of him.  Don’t get me wrong.  I am NOT replacing him    But he “told “ me to save another kitty and give him a good home.  Will do, Oliver, my special  BFF!!