On one hand...or maybe on one foot...

So, as I was working on my lovely disability forms today, a scenario was going through my head.

It's relatively common to open your happy People magazine one day and find an article about a person born with only one limb; or perhaps disfigured in an terrible car accident, who has learned to live with their disability to a point where they've adapted the remaining limb to serve them for everything they need. They can bathe and dress themselves; use the toilet, brush their hair, cook some food, and generally take care of business.

Then, it's inevitable that they've also learned to use that one foot they have to paint masterpieces or play their sonatas on the piano. I don't know--something extraordinary that gets them an article in People magazine and piles of money for their talent.

What the articles don't tell you is that the disabled person HAS to learn to carve castles out of soapstone with his toes to survive because he can't get social security disability.

These forms are bordering on insulting. Can I bathe myself? Yes. Comb my hair? Check. Use the toilet by myself? Hell yes.

Well, odds are that by being able to do all of those things for myself, I'll be SOL on disability. (that's Shit Outta Luck, in case you were wondering) They don't ask if I've learned to get my hair cut in specific ways that are easy for me to blow-dry and style. There's nowhere to mark that I have a big handle in my shower so I can hold on when I lean backwards to wash my hair under the spray. I can even prepare food for myself every day--and sometimes for the kids--but there's a big difference between Pasta Roni with baked chicken, and cutting and chopping veggies for the Asian stir-fry dish that I need to work, hands-on, for the entire cooking time, with homemade pot stickers and dry fried fresh string beans.

Nowhere in the forms are there places to make these distinctions. What if I disclosed honestly on the forms that I went on vacation to Disneyland? Are they going to ask me if I walked or if I was pushed in a wheelchair the whole time, or are they going to immediately assume I must be full of crap when I think I'm disabled?

It's a hell of a strange change in mindset to fill these boogers out. You have to toss all dignity out the window, because you are going to have a natural inclination to try to present yourself in the absolute best light--like writing a resume or something, you're trying to inflate or emphasize how "good" you are, when on these forms, the object is to honestly present how crappy you're really doing, without sounding like you're playing the Dying Swan and whining incessantly.

::sigh::

The latest lymphedema swelling is going down. My hands and fingers are still really seriously shitty, but sometimes I force them to cooperate to do things like type this. They're numb now though, so I should stop. I spent my entire day surfing the Cake Wrecks blog, which provides the maximum giggle factor for my efforts.

And off to bed for me and my numb fingers and droopy eyelids.

The experiment...

Well, let's see...the first five words seem to have gone ok. So did the next nine. Ok.

So what are we testing? I'm learning to type without actually having hands & fingers that really work and have sensation in them.

The good news is that apparently, I CAN type, albeit slowly and with an astronomical error rate, far above my norm. But the fact that I can at all is very good news. The bad news is, well, all of the above.

I don't have the foggiest idea what's going on with my body this time. Normal activities like using silverware, typing or writing, like, say, filling in a zillion Social Security forms seem to have turned my hands and fingers totally ... weird. They feel swollen, but they aren't. They feel heavier and denser than they really are, as if I can't bend them, even though I can, I just can't really feel that I can. They tingle sometimes and feel dead on the surface other times. There is deep, throbbing, dull shooting pain going up my arms to the elbow and sometimes my shoulders.

It's exceptionally hard to explain! (and I'm the one who's feeling it...) It's totally bizarre! Oh, now my hands shake when I try to hold them still. Cool!

Maybe I'll have to keep that appointment with the neurologist in August afterall, won't I? I was planning to cancel it, because if he's anything personality-wise like his office staff, then I hate him already. We shall see.

Meanwhile, back at the ranch, I can't knit, obviously, and I can't do anything else crafty-like. Typing is...interesting...and it'll be very interesting to see what effect all this typing has on me an hour or a day after I'm done.

So, that was the experiment, to see what my fingers and hands were capable of; and to see if I can do the mental part of the typing, making the fingers go to the right key.

But now I'm seeing part of Farrah's documentary, kind of by accident, so that's completely taken all my attention. It's near impossible for me to watch and it's totally impossible for me to look away...

Heigh ho...

Heigh ho, heigh ho, It's off to "work" I'm supposed to go....

But I don't wanna, and that doesn't rhyme. Oh well.

Yes boys and girls, the first wave of big thick envelopes bearing big thick sheaves of paper has arrived from Social Security. These lovelies are packets of forms, which must be filled out mostly by me, and a little bit by Lloyd, to start the process on my disability claim.

My sewing machine is calling me, as are a couple of knitting projects, but I can't go goof off and play with them, because these lovely forms have deadlines attached to them, so I have to get busy.

There are just not enough hours in the day, and for some reason, I am highly distractable. I get up at 5 am or so, and don't go to sleep until midnight or even a little later, and my day is generally full, full, full, even when I don't waste two or three hours of it on a nap. I can't figure this out. It's like magic to me. It took me an hour to read less than 10 pages of a book last night because I was so distracted by tv, talking, dogs, getting up to do things, you name it. Bizarre!

So, in the last few days, I've spent lots of time in bed, and you'd think I would have managed to at least get some reading or knitting time in there, but no, I kept getting distracted even when I was supposed to be resting.

Supposed to be resting because of a) a major, massive event of a migraine, b) one of those fun bouts of diarrhea that like to appear out of nowhere and tie me to my bathroom door and c) now a UTI which ensures that I listen to b and stay near the bathroom.

Luckily, in this house, as long as I don't go outside, I'm always pretty damned close to my bathroom.

Now thanks to reading Tif's blog, I want to sew and play with quilts, and I want to knit. The knitting is probably out of play, because my fingers are playing games with me again and going back and forth on whether or not they're going to work or just go to sleep and check out on me. That makes knitting either exceptionally difficult ot excruciatingly painful, take your pick. Sewing, I'm thinking, might work better, just because of the difference in type of motor-movement--while knitting is more fine finger movement, working the sewing machine would probably be much more gross movement, if that makes sense. Oh, and I want to learn to crochet, at least a little, and I want to work on training with my incredibly brilliant puppy (more on her in a minute), and I want to start a new book, and I have magazines to catch up on, and yoga to do, a book or two to write, and, and, and.......

BUT, no, I can't go play with fabric or yarn or any other goofing-off-ness, because I really have to work on these forms, and I have company coming tomorrow (?) to spend the weekend and I haven't cleaned a thing! Ack! Now that I think of it, I haven't made the children clean anything either, and that's highly problematic. Hrm... I guess I have more to get in gear than I thought I did!!

Grrrr................................it doesn't help one bit that I'm sick through all of this. Not at all.

But anyway.

I got our circus tickets for August--YAY! Everyone is very excited. Just thought I'd share that.

But anyway. ;-)

My puppy is brilliant!! In only two days of totally half-hearted occasional training efforts, Stella knows "shake." She's still a tiny bit hesitant sometimes, but mostly as soon as she hears the command, she flops that giant paw into your hand and goes for the treat. She is a smart girl! Anything for food! Now we just have to work on slightly more useful commands, like "come" and "stay" and "do not use the potatoes for teething toys." We will have to get to those. We started puppy class on Saturday, and we go back for the next 5 weeks. That's "puppy" class--after that, we can take the basic class, tricks, and something about being a canine good citizen. I like the sound of that one.

We were saying last night that despite her minor little lapses in judgement, we have really been lucky as hell with Stella. She's smart, she's trainable, and she generally stays out of trouble. Shredding a potato or two here and there is pretty minor--and as the former owner of Dillon the Dipshit, who ate shoes, cell phones, furniture, drywall, etc, I can attest to her outstanding behavior thus far. I remember how much chaos he caused by the time he was this age! She still makes me crazy sometimes, but I do appreciate what a good, good puppy she really is. We got lucky.

So, as I check out the status is: Waiting for call-backs from a doctor and a lawyer; finished with breakfast and necessary caffeination; sick with UTI & intestinal hell; house to clean; paperwork to do; dog to train; husband & boys heading off to Kaiser (which = QUIET for at least 3-4 hours!); and blog finished.

Yay.

Trains and taffy galore!

So, I spent my day in Old Town Sacramento, with Lloyd, all three kids, Dad and Chris. The seven of us wandered around the train museum at our own relative paces, bumping into each other randomly. Well, actually only Anna & I (we stayed together, big shock), Chris and Dad (wandering on their own) bumped into each other. Lloyd and the two boys were intently reading every word of every plaque and every piece of paper in the entire place. That's ok...that's why we took 'em!

When "we" had enough trains for one day, we headed out to start wandering, and Lloyd and the boys met up with us when they'd seen the whole museum. Chris took a billion pictures that I can't wait to see. Hopefully he'll share some good scans when he develops his film.

All in all, a nice time, a great Father's Day outing for all--especially because the boys got to spend time with Dad doing a Father's Day kind of thing (and Anna was cool with hanging with me), AND I got to spend time with MY Daddy and my brother in honor of Father's Day. I think meeting in Sac worked out well for everyone too, not too much driving for anyone.

And, I learned some things that were interesting and/or neat. I learned how big train engines really are, which was actually kind of disturbing. Some of the wheels are well taller than I am, but the height of the actual trains was *really* kind of scary.

I learned how precise and correct Laura Ingalls Wilder was in her writing and descriptions of things, because there was a train car which matched her description of her first railroad trip in precise, meticulous detail.

I learned that there were actually TWO golden spikes cast for the connecting of the transcontinental railroad, one of which was quietly held by a private family for all these years,

before becoming public knowledge in 2005. The "Lost Spike" is now on permanent display at the museum. You

can see for yourself if you don't believe it--http://www.railtown1897.org/doc.asp?id=469 There really were two of them, and I've seen one. It is very, very sparkly gold!!

I also learned of the existance of something called "railroad china." Apparently, different railroads had special china patterns, some of the big

railroad barons had their own patterns, unique patterns were created for special situations, etc. Some of the patterns were insanely gorgeous.

One is a California Poppy pattern that is now being reproduced. You can buy it through the museum to use in your own house; or, you can buy shards of broken original china which have been made into pieces of jewelry. Just gorgeous stuff!

I also learned that approximately every 7th store in Old Town is a candy store, where you can buy salt water taffy up the wazoo. We now own an insane amount of taffy. That's entirely my fault. I also bought the children chocolate-dipped Twinkies on a stick for their dessert.

Ah yes, lunch at Fat City--very yum! We got incredibly lucky with our lunch seating. They gave us our own little leaded-glass-walled room, with stained glass accents and lamps and an antique sideboard, and something gorgeous that Lloyd guesses is a serving table kind of thing. I can't even describe it, but if Daddy emails me some pictures he took of it, I'll share and maybe one of you can tell me what it is for sure.

So, we wandered around Old Town for a while longer after lunch, checked out a bunch of random stores and discovered how many candy stores there were. Anna and I bought strange socks at a store full of strange socks. And then we went home, because we'd all had just about enough trains, salt water taffy and walking, and because rush hour traffic was creeping closer and closer.

That's about it for our grand excursion, but hell, at least we got out of the house! Tomorrow, I'm off to see Andy, not for my usual monthly appointment, but for a paperwork meeting for disability. That should be totally miserable, save for the fact that it's Andy, and I don't think that there's any way time with him *could* be TOTALLY miserable.

See Mom? I updated..........

I gotta get back to doing this daily...

Ack! I did it again! This time I managed to go more than a week without posting. I don't know how I manage this.

Ah well... anyway.... updates....

Last I posted, I think Lloyd had just left for Virginia, and I was trying not to be a blubbery wreck.

Lloyd had a great trip, just like I hoped he would. Lori is, of course, the ultimate hostess, with a housefull of relatives for Allie's graduation, and still managed to make sure her Dad was occupied, going places, and having fun the whole time. The girls helped too, fussing over grandpa and making sure he was taken care of all the time. Andy's parents were there too, so Lloyd and Jim (Andy's Dad) spent lots of time bullshitting and bonding. Between that, seeing the girls, and all the sightseeing Lori packed into the days, he was in 7th heaven. Just having a break from taking care of me is a huge deal in itself, but she made it a kick-ass vacation for him. Thank you Lori!!! You and your girls are the absolute greatest. He really needed that.

I managed to run the entire household, kids, pets and even a sleepover while he was gone, just like I told him I would. I'm not sure I've spent as much time awake as asleep since he got home, but that's another story. The point is, I was perfectly capable of handling life, just like I said I would be. The kids and I did just fine, and even though I was pretty worn out taking care of the dogs, I really enjoyed the alone-time part of the time. But only part....the rest of the time I was bored off my skull without having Lloyd around to talk to! I always talk to the pets, but while he was gone I was having full-on deep conversations with them. But we did fine.

I was just really glad to have him home!!

And speaking of home, my big boy kitty came home yesterday. That's him, in that nice cedar box there. It's quite a nice little box, with a little padlock. Inside the box, his ashes are in a plastic bag, and I've added to that the little baggie with his fur in it (the fur they shaved off for his IV) and his collar & tags. It feels complete now that he's home. Weird but right.

Meanwhile, the other pets are doing well. Emma, strangely, seems to be coping with Oz's loss by actually coming out of her shell more and more. She comes out from behind the couch every night now, jumps up where I'm sitting, and begs for petting and attention. It's amazing. She wants so much attention she almost gets irritating! But, you can't ignore her when she actually wants human contact.

Stella is growing like that proverbial weed. We're going to puppy class today, and I bet she'll be at the head of the class. Her and Sparky are absolute BFFs now, and I think she's the best thing that ever happened to him. He actually PLAYS now, and not just the "throw my damned toy already" game he was so obsessed with. The two of them wrestle and run, and play with toys together, while Pea plays referee/mom over the proceedings. Sparky is noticably more energetic and upbeat now that he's playing with Stella so much and I think it's great for everyone involved, except perhaps my furniture.

Stella is also too damned smart for my own good. Yep, I was warned that Border Collies are smarter than I am and will outthink me at every opportunity, and all those warnings were dead right. She's too much fun though, and training her is a blast, because she actually understands what we're saying. I'm 100% sure that she speaks English fluently.

What else......well, we're taking a family outing on Monday for Father's Day, heading down to Sac to ride on a steam train and check out the railroad museum in Old Town. Daddy's going to meet us there, so we'll be a nice big group. He's coming up for the 4th to play with fire too, which will also be lots of fun.

We've got to come up with a few more group activities before mid July, because that's when the kids leave. They are going back east this year, but only for a month. We want to find a few more things to get out and go do before they leave, because once they get home, we won't have much time before school starts.

We did get our circus tickets yesterday though! Everyone had SO much fun at Ringling Bros. last year, we're making it an annual event. Both boys, but especially Conner, were verrrrry cynical going in, thinking it was going to be a really lame, little kid-ish thing with lots of dancing clowns honking horns or something. They were both, but especially Conner, BLOWN AWAY with what it was really like, with the lights, sound, rigging, theatrics, acrobatics and everything else. Now they're really excited to be going again.

On the medical front, which is technically why we're here, there's not a ton to report, but it is significant. The lymphedema is waxing and waning lately, which concerns me. It never seems to go away ALL the way, so it's always in some phase of coming or going. I have to to Dr. Mazj about that when I see him. I see him in a couple of weeks.

He sent me for a pre-visit CT scan this week, and that gives me tons of anxiety now. The last one was where they found the weird "ground glass opacity" in my lung, which no one has any clue about. It's not cancer, but no one really knows what it is. I saw the pulmonologist once, and he was a total jerk. He sent me for bloodwork, and I never heard anything back with the results of the bloodwork. That was right at the time I had my complete breakdown and refused to go see any doctors for a while though, so it's undoubtedly partly my fault. I'll go 50/50 with him on that one. Yeah, I should have tried to go back and see him, even if he is a jerk, but he also should have at least called and told me what came of the 6 tubes of blood I parted with.

My daily overall "how I'm feeling" is still really variable, but I can't say I'm doing too bad. I have good days and bad days and really bad days, just like before, but the good days are becoming more common. I still pop up with strange and random symptoms that I don't understand, almost always on a Friday night, of course. Last night, I noticed some strange vaginal discharge and associated pain, but of course it's not severe enough to worry about at the ER level, so I have to wait until Monday when there are doctors available normally.

Overall, I do pretty good, but there's always something, you know?

That seems to be about it, at least as far as I can think of. It's about time for me to go get showered and ready for puppy school. I've got to get all kinds of puppy training gear together, since I don't know if the trainer wants check collars or pinch collars or long leads or retractable leads or what. I've never taken a dog to professional training classes before, so it's a wholen new world for me, but as I've said, this dog is too good to waste. She's too smart and good tempered and everything else to let her grow up as an untrained wild thing who gets banished outside or something. Nuh -uh!!

So, off we go.

Hopefully, for less than a week this time! :-)

A chapter closed

Well, I did it. I stayed strong enough to stay in the room and hold my baby till the end. It was the hardest, painful, heartbreaking, most anxiety-provoking thing I have ever done in my life. Nothing else even rates high enough to matter.

What was amazing is how it went from "not time" to "it's time" in what seems like an instant. We were all shocked that he did so well for so long, but in an instant, he was a changed animal. Fine one day, and the next, a shadow. I was afraid I wouldn't know for sure that it was time, or would doubt my decision and second-guess myself, but there is no chance of that now. He told me, in no uncertain terms.

Most of the rest of yesterday is a complete blur that involved a lot of sleeping.

This morning, Lloyd left for Virginia to go to Allie's graduation and hang out with Lori and her family for a few days. He desperately needs the break. He's been taking care of me non-stop for a year now, and he really needs some time on his own, in another place, where he can relax and be a dad and grandpa instead of a caregiver. I admit, I'm going to be exhausted beyond all rational belief by the time he gets back, but it's worth it for him to get that break. I wish he could have a lot more breaks.

Obviously, lots has gone on since I last really updated things, and I've lagged, sorry. Trevor's 8th grade graduation went well...sorta... Thanks to some MASSIVE lightning and thunder storms the night before, the entire event had to be moved indoors at the last second. The event planner in me just shudders at the thought of what they had to go through to make this happen, but I don't think it was any fun for the graduates or the audience either. Hot gym-like building, rickety, evil bleachers, bad sightlines.... But at least Trevor got all his full honors, gave the best speech of the night, and is now officially set forth unto the world as a high schooler. Lord help us.

During all of this, I was unfortunately fighting another massive lymphedema attack. Before I got cancer, I'd never even heard of this stuff, and now--it is one of the most feared things in my life. My ankles gained an inch; my calves two inches this last time. I was carrying more than 12-14 lbs of fluid weight from the tissue congestion. HELL!

And even after it's gone, it's not. The places that were swollen are now exceptionally painful and sensitive and you dread accidentally touching them. Urgh!

So, gee, other than those things, there hasn't been a whole lot going on around here. Ha ha, right? I'm already tired, and it's time to go make dinner for the wet wolf pack (they were playing in the kiddie pool with Anna) and then make dinner for the hopefully dry child pack.

Quick note!

Yup, somehow I let a week go by again.  Oops.

I'm still out here, and of course a lot has happened, and I'm working on writing a blog post explaining all of it, but right now, I just have one piece of news: Oz.

This morning, the universe told me it was time, so tomorrow at 10:45 we have an appointment at the vet.  He's declined even more, and faster since this morning, so I KNOW know that it is the right decision at the right time, which helps met at least.  The kids have had their time to say goodbye, and I'll get mine.  How here's hoping I can stay as strong as I want go.

That's all for now. Everything else can wait.