Please note that the comment section is "no reply" which means I can't reach you unless you leave a way for me to do that. My email address is at the top if you wish to contact me. Also, please, no soliciting. Thank you.

Friday, April 25, 2014


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.

Thursday, April 17, 2014


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 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.

Friday, April 4, 2014


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.

Tuesday, April 1, 2014

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).
Click on "Older Posts" to read more!