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Saturday, May 31, 2014

Quietude

Giving up Vinnie was difficult but necessary, and he is in good hands.  Although Hamta doesn’t work for me anymore, she has sent me email updates and I did see a picture of him on her phone, on her last day here.  I miss him, but am enjoying the quietude.   Now it’s just me and the hummingbirds with a sliding door between us.   I doubt I’ll ever get another cat.  If I had gotten an older one like I intended, it would have been fine.  But I gave away everything cat related: the carrier, two dozen cans of food, toys….the works.  We’ll see  I just don’t want to worry about what will happen to the cat after I die; and caring for him is way more work than I am now capable of and sad to admit.   But watching the Decorah eagles and the Peregrine falcons on upstream is interesting and educational and makes me smile.

I’m trying to let go of all the jumping up I do even with help here.  I usually throw my own sheets in the washer so that by the time my helper gets here (Jeanie) it’s ready for the dryer.   But starting today I’m letting her do it all.  I have control issues, what can I say.  The pain just keeps ratcheting up; I really don’t know how much longer I can stand it.  My dad is not doing well and I worry so much about him.  And I’m so saddened that I just can’t get to him or him to me.  It’s not that people aren’t willing to take us; it’s that neither of us can be in a car that long.  Forty-five minutes without traffic.  Too much.

So, as summer creeps along I’m enjoying the sunshine from my couch but not feeling let down about it too much.  I think I’m just hanging in there and being grateful for what I do have.  I watched a documentary on Stephen Hawking last night.  It was about G-d and the Universe.  He is a firm non-believer, but as a scientist, not as someone who feels jilted because he has had ALS for over 50 years and is basically “locked in”, unable to communicate except via a computer complete with mechanical voice.   I haven’t a clue how it works but he is a world famous physicist with best selling books and goes on lecturing tours all over.  He expresses gratitude for being alive and making the most of it.  I find it fascinating, listening to him.  While he claims not to believe in a higher power (and makes a case against it), I find his arguments a bit conflicted.

For instance (and no, I’m not a scientist) he uses the example of a river and asks the question “where did the water come from?” He starts by stating “well, it could be from the rain” but where did the rain come from?  Clouds and moisture in the atmosphere, but where did that come from?  The sun and particles within, but where did that come from?  And on and on….until he got to black holes.  I have a limited knowledge of black holes myself, but as he explains it, he says they are so dense that everything, even time, disappears within.  He said a clock would actually stop working if sucked into one.  THEREFORE, he states, when the Big Bang happened, it happened when there was no time….so asking “When” did  G-d created the Universe, is pointless because it happened when time didn’t exist.  So G-d didn't have anything to do with it.  Fine.  I get that.  But it was at that point he stopped asking “where” did the black hole (or who created it) come from.    I found that interesting.  A black hole was responsible for the big bang but we still don’t know where the black hole came from.

I have way too much time on my hands.  Perhaps the pain makes me see things less clearly.  All I know is I’ve had way to many experiences in my life to not believe in G-d.  And if it’s not true, if there is no G-d, so what?  After I’m dead, it will either matter or it won’t.


Wednesday, May 21, 2014

Bye, Bye My Boy

Don’t know what is worse right now; the pain in my body or the one in my heart and soul.  I have to surrender Vinnie.  I’ve tried for four months, almost five, but though I love him, it just isn’t a match.  He is so young, so playful; I’ve tried everything including letting him on the deck in a harness.  He escaped twice, I had no choice.  He doesn’t mean to hurt me, but he loves jumping up on me and he hits the tumors in my leg and it’s unbearable.     And he wakes me so early I don’t get any rest.  He just needs a more active home.  I know I’m doing the right thing, but I don’t have to like it.  Sometimes those are the hardest choices; the ones that hurt but are right.  And I just am not ready for another animal right now.

One of my helpers, Hamta, is taking him for me.  He ADORES her….I’ve been calling her “his girlfriend” since the beginning.  We’ve talked about it a lot and today she said she’d take him….and then asked me a lot of questions about his care.  And I’ll give her everything I have for him; carrier, food, toys, bowls, harness…she won’t need to buy a thing until he needs more food.   This is going to be so hard.  She’s quitting too, she finally got her home daycare business going…so she’ll be gone June 1st.

These kinds of choices are so hard.  But my health has to come first, and he is just too much work for me, even with the help I get.  Too demanding, too disruptive and too young.  I did it all too fast after Oliver.  Missing the beat of another heart just did me in.



 What's in here, anyway??

Sunday, May 18, 2014

Unbidden

It comes to me unbidden, during the light of day or the dark of night, coaxing my attention away from the endless distractions I have deigned useful but are usually no more helpful then the endless pain killers which kill nothing but my spirit.  The acupuncture helps with some of the other issues, as does the meditation, but not the pain.  Seldom the pain.  One good day in four weeks.  And by good, I mean a 6 on the 1-10 pain scale and by “day” I mean a handful of blessed hours where I can think, eat and feel something woefully unfamiliar to me: happy.  That feeling was so short lived on my “good” day, by the time I figured out what it was, it was gone.  I am not being poetic.  I mean it literally.  Gone in the heartbeat it rode in on, gone for who knows how long, gone until next time, if there is one.

It IS getting worse, no two ways about it.  I can stare at my legs and see the tumors throbbing, hurting and probably growing before my tearless eyes.  My chest is so full of tumors I’m not bothering with my overdue mammogram, even though I am a breast cancer survivor.  What is the point?  I’m so thin I don’t really have enough breast tissue and those things hurt the average woman with no tumors.  Me?  Another agony to contend with.  Well aren’t I upbeat today!  But what’s the point in sharing my story if I’m not honest.

When I read about how “brave” someone is when contending with an illness I wonder how long the person has been sick, how long they have to live and whether or not they are dealing with neurological pain, the hardest to treat.  Of course, like me, people tend to put on brave faces when they can.  Complaining constantly, like I am now, only drives people away.

And I’m not sure my very young, very active and very annoying cat is making my life harder or filling it with pleasure.  Mostly, I think about giving him away so I guess it’s the former.  I love him but don’t have the energy for his antics, which now include running away when I open the front door.  He comes back and I want him to because if I do give him up, I want to know it’s to a good home, not the world at large.

I guess I’m not feeling very philosophical or brave at the moment.

Sunday, May 11, 2014

Brain Train


I’ve been thinking about whether or not it would be possible for me to re-train my brain so that it stops interpreting pain as pain.  Not easy to do.  But it’s been so bad; I am just at my wits end.  So I tell myself it isn’t pain that I’m feeling.  I tell myself I’m feeling euphoric, and that my legs aren’t really on fire, the tumors aren’t really pushing through my skin (picture placing large heavy metal balls on your legs and wrapping them tight in an ace bandage….that’s what the pressure of them growing feels like) and my legs and feet are numb, on top of the pain.

It is so hard to maintain the balance of being in the world yet taking myself out as often and as for as long as possible.  Whenever I’m succeeding just a tiny bit, something pulls me back, usually the pain.  But it’s like trying to hold onto a really cool dream….you just wake up and it’s over.  You can’t maintain that kind of control for more than a few seconds.  At least I can’t.  I’m sure there are people who can, through practiced meditation.

Have you ever felt you have been kicked out of the club?  The list of things I can no longer do makes me feel that way sometimes.  I can’t remember the last time I went out for a meal, a movie or even a trip to the library to get a good book.  I don’t really care about buying things, but I would like to occasionally feel like I belong to the human race.  If it weren’t for the help I get (and my hours have been increased though I don’t know how that will work because my current care givers have full schedules) I’d be insane from isolation and the inability to take care of the simplest things, like grocery shopping.  I don’t even remember what it feels like to have the sun shine on me while I walk along a beach.  Major pity potty day!!!!  I know, I know….roof over head, food in belly, people who care.  I’m one of the lucky ones.  Woo Hoo!

Seriously, I am grateful I was accepted for help with DSHS and I have someone here for a few hours in the morning.  The problem is all the restrictions.  They can only drive a total of 60 miles per month which may sound like a lot; but it’s a minimum of five to eight miles for shopping, and since I use three different stores for what I need, that adds up.  Last week I used over 15 miles to doctor appointments.  One I dragged myself because it was close and I couldn’t get in when they were here.  They cannot take me to a PET STORE to get my cat what he needs…..even though Vinnie is part of my life and my needs.  It’s beyond frustrating.  When I go over the hours the person in charge calls and screams at me.  It isn’t my job to keep track; it’s hers.  My social worker was here last week and she told me the woman I’m talking about has been a problem for them, but the provider contracts with DSHS so she’s stuck.  But my social worker is retiring so I’ll have a new one.  I hope she is as good as the one I have.


I’m in a mood.

Wednesday, May 7, 2014

Gnats Included

One of the most difficult parts of my condition is not having any control over being able to get up, get out, and get things done.  I realize the “control” over our lives is primarily an illusion (we plan, G-d laughs) but I need that illusion sometimes.  And right now, I am completely out of control.  Vinnie needs different food (won’t eat what I have) and I need COOKIES.  It’s an emergency for heaven’s sake!!  LOL. 

What it has taken me years to learn, is the differences between needs and wants, right now or can wait, and planning.  I’ve never been good at planning and it’s still a struggle to make lists, see what I have on hand and what I actually need (I try and have my helpers keep me apprised of household items since they are the ones who use them) as opposed to what I just want.  And everyone knows that immediate gratification takes too darn long!

Having what you want is one thing.  Wanting what you have is a completely different ballgame because it includes wanting the gnats.  And my gnats are rather large.

Today the pain is a bit better.  The past few weeks have been horrific; I’ve kept track.  The last five patch changes (15 days) I’ve had almost no relief at all.  The pain has sustained at about a 7; higher at night.  I cry and pray most nights.   I hate asking for things for myself, but I’ve been wanting (of course) to be pain free or free of my body and G-d isn’t responding to either request.  Guess there is more for me to learn.  Darn.  The only thing I’m learning about these days is eagles on that Decorah Eagle site.  It is fascinating and it does get me out of my head and my body, so that’s good, right?

Today I see the GI person, though they couldn't get me in with a doc…nurse only.  But I have some concerns and I don’t know if the problem emerged due to the yeast infection or if it’s something new and different.  I had a colonoscopy about three or four years ago; I don’t think it’s serious but I just want to be sure.  And I wanted to get in right away so unfortunately, the appointment time is when I don’t have help.  The good news is that the office is about two miles from me so I should be okay.  If I’m in too much pain to drive, I’ll call a taxi.  

Whatever the problem is, whatever new problems come up, I want to know about them.  But I will not be treating anything serious.

Dad sounds better but I know he’s struggling too.  He is a fighter though…guess that’s where I get it, huh?

Saturday, May 3, 2014

Decorah

I’m spinning today.  The pain has been so out of control for so long, and again, I do believe it’s because I’m also fighting a yeast infection that I’ve had for well over a month; nothing seems to kill it and my body just can’t fight that and the pain. 

See, this is what’s hard about chronic conditions.  A simple flu or cold or yeast infection throws everything out of whack.  I’m crossing my fingers that is all it is, and when it’s cleared up, I will go back to having a day or so a week where I’m not in this much pain.  In the meantime, a friend sent me this site and it’s fascinating.  It’s this eagle nest in Decorah, IA.  It has a live streaming camera on it and you get to watch the eagles mate, hatch, and the eaglets grow.  Visit it: http://www.ustream.tv/decoraheagles .    They are about five or six weeks old now and will be fledging (learning to fly) by the middle of June.    I’ve been reading up on eagles so I know mom from dad now.  Anything to take my mind off this pain.  But it’s fun to watch even if you’re healthy!

I just can’t think straight anymore.  Worried about my dad, who is back home now, which is good and getting his strength back, which is good.  But he sounds so defeated to me.  I love him so much it hurts and I want him to have what he wants, whatever that may be.

How much longer ‘til the pain
helps me know what I have gained?
How much longer ‘til I see
what my life has meant to me?
How much longer will it be
til’ my soul will be set free?
How much longer ‘til I glow
with all there is I need to know?
How much longer ‘til I find
there is no forward, no behind

How much longer will I plow
my way to only bow to now





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