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.

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 1^st.

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??

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.

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.

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?

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

Split

Not much to say about myself lately.  Pain bad.  Gastro challenges still here.  Two infections in inconvenient places in my body that I’ve had for weeks and weeks, neither of which will clear up. Yadda Yadda Yadda.

My dad’s pneumonia sent him to the hospital for several days and he’s in rehab now because he got so weak he can’t go home yet.  I’m glad he’s there, because both my brother and sister will be out of town (they only overlap for a few days but still) and that’s a safer place for him.  My sister and he have gotten a lot closer over the past weeks, which I am very happy about.   Dad’s complaining about his roommate and not being able to sleep.  But he’s working the program and getting better and my sister is a great cheerleader.  I email him words of encouragement.  Poor guy.  No one should have to suffer in pain, but especially at 90.  I love him and I just want what he wants (for him).  He worries about me and I just tell him I’ll be fine and there isn’t anything to worry about.

Times like these, when family needs you, is what is the hardest thing about not being able to get places.  No way can I sit for a 50 minute ride to be with him.  Even if I could find a ride where I could lay flat ( like in an ambulance), once I got there, I’d be through the roof in pain.  I am now, and I’m lying flat.  My most comfortable position isn’t that comfortable anymore….the tumors in my head make it hard to lay flat but when I’m raised, my whole body is in agony.

I’m split in two so vividly in my mind.  My body and my soul.  The only pain relief I get is by leaving my body and going off into space in my head, or if I’m lucky, an actual out of body, astro projection- like experience.  Those are rare.  I need to listen to drumming again.

Vinnie, my cat from you-know-where managed to escape yesterday but I got him in my shaking a treat bag.  And attracting three other cats that hang around my door.  Then he came in and sat on my keyboard and did something that made the whole thing go from landscape view to portrait.  I could not figure out the keyboard strokes but had a pretty good idea how to fix it….it was just working on it was hard because I had to turn it sideways to see what I was doing.

He’s on probation.  Again.

Afterwards

For the past few months, I’ve been planning for what I want after I die.  Given my situation, it just feels like the prudent thing to do.  Consciousness can be a burden at times, and sometimes that burden is insupportable and shifts to others around you.  You must act while you still can so that your family knows your wishes and are not left wondering.  When death comes suddenly, unexpectedly, people are often confused and fighting with one another over what they thought you would have wanted.  So even if you are healthy and even though it’s scary, write everything down and let everyone know what you want after you die.  Even better, have a conversation with those you love.

I have been wrestling with whether or not I want to donate my body (or parts of it in the form of tissue) to NF research.  I found out ctf.org is getting close to setting up a system for bio donation.  I’m already on the NF registry but they need blood samples too and right now they don’t have a local blood draw place so once that is done, then I finish my registry by giving blood.   And then when I die, they keep my body for 24 hours to take what they need, and return it to my family for burial or cremation.   I’ve been thinking about cremation and having my ashes strewn over a bakery, but that’s not reasonable so burial it is.  My brother and I had a long talk about it; I just need to get things in writing.

Every morning I wake up with one less leaf on my tree.  The pain eats away at me and the only way I can think to make it better would be either a medically induced coma (which I’m guessing, the doctors will not agree to) to leaving my body myself with some out of body experiments.   I’m not ready to make a final exit but that may change.  Who knows.  I’m just having a very, very rough time of it lately.

My dad’s not well and my brother and sister are left to deal with him and with me.  It isn’t fair.  Yes, they both have pretty good lives (with just the normal challenges) but that doesn’t make it okay.  I have done all I can do to get the help I need and I know they appreciate that, but I’m spent.  I can’t take another challenge.  Whenever a health issue arises for me, I just want to ignore it and let it run its course.  Somehow, I always come up fighting.  I just don’t think there are any more battles left for me to win.  I mean, we are all going to die.

Neurotic?

I don’t mean any of the following as complaints; I just need to set the stage for my question at the end.

As you may know, every once in a while I get a break from the pain.  It will suddenly, unexpectedly and welcomingly drop from the usual 8-10 (pain scale) to an astonishing 5-6.   See, people don’t normally measure their pain…no reason to do so unless you slice your finger instead of the carrots.  And that pain is different.  Usually not the kind of nerve pain that I’m experiencing.  Painful, you bet.  But emergent, not chronic.  It may be a 10 when it happens, but it drops quite rapidly with a couple pain pills.   And sometimes chronic but not constant pain, like say, bursitis, hurts a lot too.  Maybe even a “10” now and then.  But again, not constant.

Constant pain feels (for me) like someone is forever sticking a nail in your arm and twisting every now and again, adding lemon juice for an occasional irritating variety. Cracking your elbow and hitting your “funny bone” (which is far from funny) is the closest I can come to explaining what nerve pain is like.  But for me, it’s from the waist down.  All. The. Time.  That zinging, zagging buzzing like a million bees feeling that numbs yet-is-painful and to which I’ve grown accustomed, though not happily.  Due to the leg tumors, I can only wear sweat pants or something equally soft because any kind of pressure hurts like heck.

Now, the average healthy person might think, “Boy, she must really be happy when the level of pain drops” which is, by the way, as unpredictable as the weather.   I’ve given it more thought than just about anything else in the past 15 years (including blaming it on that unpredictable weather) and am no closer to figuring this out than I was when this part of my journey first started.  Don’t get me wrong; I am happy when the relief days come.  And grateful.  I pray non- stop giving thanks for it, especially if I’m able to get out without help (my car’s battery has drained three times for lack of use). 

Hang on.  We’re almost at the neurotic part.  I’ve tried many different things to take advantage of the feeling good days, from staying home like I normally do, hoping for a second “good” day (but staying home is so darn tiring) to going out to two or three stores and really taking advantage of feeling good and also a bit more “normal” whatever that is (and then I pay for it big time the next day). Normal doesn’t really fit into my lexicon.  But the why and how it happens, let alone trying to create it at will is hopeless.  I simply don’t know why or how let alone if and when.  Kinda like life, eh?

Okay (whew), here it is.  The neurotic question of the day:  Lately I have been asking myself, would I be better off by not having any good days (pain wise) because they only highlight how bad the rest of my days are? 

Crazy, eh?  A bit, well, Twisted.  At any rate, today I am having a hell on wheels day in terms of pain so I’m praying for a break in it.  And that’s the conundrum.  I want a break, of course, but by getting them I seem to be making myself hyper aware of how bad the bad days are which makes me less accepting of them.  I know.  I’m neurotic.

Nearly a Year

It’s hard to believe that it’s coming up on one year since Ted passed.   I was so hoping to be shortly behind him.  And yet, here I am.  My body continues to challenge but spiritually I seem to be a bit better, at least some of the time.  My helper situation seems to be sorted out at the moment so that’s good.  The moment.  Stay in the moment.  I mean seriously, what makes us think we have a choice?  We act like we do, but living in fear of our future tells me we are out of sync with ourselves.

If there are parallel universes I sometimes imagine a healthy version of myself living as a successful published writer, helping those along the way, traveling to places where people are in need for whatever reason (like the mudslide less than an hour from me in Washington) and generally having a totally different life than the one I’m having.  At the same time, I want to fully experience the life that I AM having and appreciate the good things in it; like a roof over my head, food in my belly, access to medical care and people who love me.  No, I never created a family of my own in the traditional sense.  But I have a full family of origin and friends.  So I am indeed blessed.  Funny that when we imagine another life it is always what we perceive to be “better” than the one we are having.

But is it?  What would I have learned if I didn’t have NF?  What kind of person would I be?  Would I have a husband and children?  Or at least, a partner?  Would I be kind, or cruel and selfish?  I know I’m a bit of both but primarily, I hope I am seen as the latter.  It’s funny because I always try and be especially kind to the people who are helping me, saying please and thank you and talking and laughing with them.  But when I get upset about something that has nothing to do with them and they hear my anger…well, let’s just say that one care giver quit because of my personality.  It baffled me because I thought we got along great.  I even bragged to family members about what a good oatmeal maker she was and even told her that I did.  Although she just up and quit and didn’t communicate with me, I think she was insulted and thought I didn’t accept all her advice and suggestions.    The reality is, I can’t take it personally and it had nothing to do with me, even if she thought it did. 

The pain is great today, but I had a little break this past weekend….I actually even got out on my own, a rare event.  I so cherish it when the pain gets down to a 5 or 6.  Right now it’s about an 8.  Not howling mad pain, but close.  And I still miss my new and brief communications with Jaime, who just disappeared after a short but fun online relationship (to NF).