Friday Frenzy

I’m in that “Stop the world I want to get off” mode this week.   I was having some serious hang-over problems from the sleeping pills I was taking in order to counteract the insomnia that comes with mass doses of steroids.    The first half of the week was lost in a fog of staring into space waiting for my brain to reboot.

So I’m done with the steroids as of today, and the relapse was halted fairly quickly, so that was good.  But physically I think I’m back to where I was a month ago, maybe.   No cane or crutches or ankle brace, but still walking with a pronounced limp and foot drop. 

Enough medical crap, really.   Being sick is my second full-time job.

The workload  in my real full time job has exploded exponentially.  I thought I was getting things pared down to a manageable level, but suddenly there are ten projects all with deadlines in the next couple weeks.   I have NO idea how I got into this.  I was feeling like I wasn’t really carrying my share of the load around here, so I took on whatever new things came my way – and also ended up taking on some “helper” roles on projects that one of my partners was overloaded with.   Net result is I will be working this weekend, and working my butt off all next week.

The step-kids and step-granddaughter (Will I ever get used to just saying “my granddaughter?”  Probably not.) are coming up for a visit Saturday afternoon and going out to dinner to celebrate SO’s birthday and their anniversary, which is the same date.   I have to get him a present before his real birthday which is next week.  Yikes!

When I got home last night, his ski clothes were laid out ready to go somewhere.  What a surprise that was.   In the seven years we’ve been together, he’s never been skiing without me.  He doesn’t really have close friends of any sort, so I was surprised that he had made plans to go with a guy he used to work with.    I am always encouraging him to do more  social things, more fun things, not just always grinding away on errands, projects, chores and to-do lists.     But I still have to admit that it stung a bit to have him going skiing, when I have not physically been able to go this year.

I found a lot of unreasonable (?) resentment bubbling up, along the lines of, “I put off having a life for years while you were too busy working, and now that I’m sick and can’t do things, you’re not working and going off and having fun.”   I kept that to myself, of course.

I was the number-one cheerleader encouraging him to get out of the rat race and have a life for awhile.  It’s certainly not his fault that my body pooped out the same time he quit his job.  And it was lucky he did quit at that particular time, because I needed to be taken care of – especially in the chauffeuring department.

Ah – relationships!    

Ancient History

I’ve been playing around with this “blog” idea since before the term Blog existed.  Really.  1999 was my first registered site, on Yahoo’s Geocities I think.  I started trying to keep something on D-land last year.      

I’m sure there is probably some way to import this old stuff with its correct dates and such, but I’m not going to invest the time and energy right now.  I  think I will just cut and paste.

Sorry if its disjointed and confusing.   Welcome to my life.

February 20, 2007 – 5:31 p.m.

OK, I’m figuring out how to make this Diaryland thing work. I have contemplated having a blog for years. Even started one back in 1999 when everyone and his brother didn’t already have one.

Problem is I know I’m not going to be a regular updater. But if I am mentally writing entries every morning in the shower, it seems like it might be healthy to get them out on “paper.”

February 24, 2007 – 10:39 a.m.

Sometimes I wonder if I have an internet addiction. If you’re reading this you’re probably laughing and thinking, “Well, duh. Don’t we all?” I wouldn’t be concerned if I just enjoyed surfing around and found lots of interesting things here. What does concern me is this vague feeling of needing something, not knowing what, and instinctively clicking the big blue “e” to seek satisfaction. It’s a similar feeling to the one that causes me to wander into the kitchen and eat cookies when I’m not really hungry.

I don’t consider that an addiction, because I am still thin and in shape. So the food is not causing me physical damage or affecting my personal or professional life. I have never really suffered any other addictions. I’m lucky there. But I have lived with others who did. It was not fun.

I keep thinking that I must feel my life is not full and satisfying, or I wouldn’t need to search for something on the other side of my monitor. But my life is pretty good. I don’t lack money or love. What more could I really want? Fun, I guess. I do lack fun.

I surf at work because I’m bored with work. I think that’s a simple fact. I surf at home because it’s there and I’m lazy, tired or unmotivated to do anything more creative.

Enough for now. I’m supposed to be working. 

March 26, 2007 – 7:31 a.m.

What was I thinking when I thought I had time to keep an online diary? I obviously wasn’t thinking about getting a puppy. But some sort of obsession overcame me. It was only a matter of time haunting the humane society websites before the perfect critter showed up.

There is a big part of me thinking that I must be out of my mind to get any sort of puppy. I work full time. My house is not puppy-proof, and we like to travel a lot.

But I didn’t just get any puppy – I got a three-month old 20 pound Great Pyrenees. He will most likely be over 100 lbs full grown, and will certainly throw huge tufts of white hair everywhere.

But I’m in love, so it really doesn’t matter, does it? He’s cute, and lovable and very mellow for a puppy… he plays hard, then sleeps hard.

And (knock on wood) after two weeks, I think he might be almost housebroken.

Yay for puppies.

Not the end of the world

Things are looking better.  The setback seemed devastating last week, but quick intervention with massive-dose steroids seemed to keep it from getting too bad.  My walking ability isn’t quite back to where it was before the flare-up, but it could be worse.  I ditched the cane on Friday, and the big ankle brace yesterday.  I’m just using a black elastic Ace thingy. 

I did however, spend most of yesterday in a stupor.  Some sort of drug interaction, complicated by having several glasses of wine at a fundraiser Saturday night.   I’ve had no trouble before, and even thought I had scaled back on the pain prescription,  but ended up vegging unable to do anything but stare at the tv most of Sunday.   Before you freak out about painkillers and alcohol, I should explain what I call “pain pills” are actually an anti-seizure type drug used to treat neuropathic pain.  One that is suddenly, commonly being advertised as  useful in treatment of fibromyalgia pain. 

So -whatever.  Health, blah blah blah.

The SO and I have been trying to come to terms with how to clean up the landscaping.  My approach is the messy, overgrown English Garden look.   He prefers concrete sidewalks and weedkiller.    I was an avid gardener for the first 10 years or so that I lived in this house (1989-1999).    Since then I’ve sort of let it go downhill.   The bones of the first decade survive, but things were getting mighty overgrown.    Saturday I gave him the ok to remove some huge rosemary shrubs that had taken over the already minimal space between garden and cars.  

Since he has to haul the trash cans out to the road via this path every Monday morning, I didn’t feel I could continue to insist that he get scratched in the legs and poked in the eye every time.

So the negotiations will continue. 

I really am grateful to have him there, doing all this for me. (us).  After ten years of an alcoholic who refused to even take out the trash I have not become ungrateful. 

Contrary to my goal of not writing about my health all the time – here I am, writing about my health.  I’ve had a fairly devastating setback.  Again.   After October, when my leg was paralyzed I worked hard to get my strength and function back.  I started on a monthly regime of chemotherapy, which was supposed to beat up my immune system enough to keep it from attacking my spine again.   Until yesterday, I was willing to believe it was working.  I felt a bit weak after Friday’s chemo, but wrote it off to the effects of the drugs.  Saturday evening I started feeling more numbness and pain, and went to bed wondering if I’d be crippled upon waking.   That’s always a good sleep inducer, eh?  I wasn’t crippled on Sunday, but the numbness was much worse, and over the course of Sunday my leg started to get weaker and number, to the point where I now need the damned cane again to keep from tipping over.

I am probably going to have to start thinking in terms of getting better, but not ever getting well.  You see this when it happens to other people, and you can tell that they’re on a downward path, where their disease is getting the best of them.   But it’s harder to recognize, or accept, when it’s happening to you.    How many times have you seen someone fighting cancer, and you know they are loosing, yet they do the chemo, the radiation, they hope for some miraculous reprieve.   Some get it.  Most don’t.

 This isn’t cancer, I repeat.  It isn’t even anything very understandable.  But I will fight it, as hard as I can.  I just don’t know anymore if I can win.

Some Vacation Photos

Here are some photos from our trip.   I spent most of the day sorting and organizing them.  And realizing that blurry blue underwater snapshots are probably not interesting to anyone but me.   So I will only inflict one of them on you.   This is a Smooth Trunkfish.  They are very cute,  and not afraid of divers -hence the not-quite-so-blurry pic.

  Yes, there is a fish in there.  Click the thumbnail if you really want to know. 

 This is the prototypical Caribbean beach scene.  I need to keep looking at these pics to remember that the trip really happened.  It really is that warm and sunny and blue.   We were talking today about the bathroom remodel and it suddenly struck me to use this picture as my color theme.  I have been wanting to use sky-blue mosaic tile somehow.  I think that the fixtures can be an almond color similar to the sand, and the cabinets can be a light warm wood of some sort, then I can go nuts with the tile.  

Ahem.  Back to the vacation.  That picture was taken at this wonderful bay that is huge, but only knee deep.  It is where everyone learns to windsurf.  The first day we were there, there was no wind.  Everyone said that is very very unusual.  But it was perfect for us to be able to snorkel.  The reef is way out at the far side of the bay, so we rented a little sit-on-top kayak and paddled out there.   We dumped the kayak on top of a little dock and explored the whole reef for an hour or so.  The quiet, protected, shallow bay is perfect for juvenile fishies to hang out and be safe, so we saw lots of them. 

 This one is from a spot in the resort.  They have a little spit of concrete the sticks out into the water and is filled with lounge chairs and sun umbrellas.  It’s a quick walk to the bar, so it was our favorite spot for happy hour.  Strangely, most people bailed out when sun-tanning time was over, so we often had the place to ourselves. 

Every sunset looks like this.  Really.

I guess that will give you the general idea. 

They will not let me out of here until I pee in a cup.  And of course even though I’ve had three bags of saline, and four papercups of water, I CAN’T.   Grr.  

Still here… some history

I didn’t get as much done as I’d planned.  Big surprise not.   It was surprising that SO came to visit around lunchtime.  That was unexpected, but not unappreciated.  Since I’ve been back to driving myself he hasn’t done that.    This is my fifth of six monthly chemo treatments.  It doesn’t make me sick or make my hair fall out, so I really can’t complain about it.  It does require spending an entire Friday each month just laying around in a hospital bed. 

I imagine that my imaginary audience might want to know why I’m in a hospital getting chemo.  One might assume cancer.  But one would be incorrect.  I am getting chemo for a “lupus-like autoimmune disease.”  I was diagnosed with this in March of 2006.  It came on very suddenly and caused a lot of havoc in my life, but no real disability.  Then in October of 2007 it flared up badly and paralyzed my right leg.  This was fairly terrifying for me, because I could not move anything except my big toe.   The doctors didn’t seem as concerned as I was, but then it was not their leg.   They said it would “probably” come back “fully.”  But for almost three weeks it didn’t move.  I was able to walk with crutches by locking my knee straight, and the leg could still bear weight.  And I could move it by swinging it around.  Very awkward but I continued to go to work.   Of course.  Always work. 

Since then I’ve been slowly recovering.  I say slowly, and people I know say tactful things, like, “Gosh, you’re still limping, eh?”  The physical therapist says I’m doing really well and she’s pleased with my progress.   I still have a limp,  and can’t walk fast enough to keep up with a typical brisk pace, but at least it’s not painfully, obviously slow, as it was for the first couple months.    I would like to get back to running – in the weeks before this happened I was running a couple miles at a time, but not very regularly.  Predictibly, I always want what I can’t have.  When I couldn’t walk at all, I swore I’d be happy just to be able to walk normally.  And I will be.  But I really want to run.

 I was never a great runner, or a very consistent one.  But I did it enough to know that I felt healthier and happier when I did.  And enough to set my usual crazy goals like running a marathon.   I have never run more than 6 miles at a time, but I didn’t plan to let that stop me.    I still don’t.  But I’ve always had unrealistic goals.

My current goal is to run a half-marathon that takes place here in October.   I have eight months.  But I’m starting from scratch.  Scratch as in not enough strength in my leg to run at all.  I can do the elliptical trainer for three minutes.   I can do a bike machine for 15. 

In addition to loosing all the strength in my leg (atrophy from disuse for three weeks) it’s apparently typical that you loose the automatic ability to make the movements necessary for walking.   Even though I can move my foot and leg in the motions necessary to walk they don’t remember how to do it.   I have to stop and think, “Bend knee.  Extend foot.  Heel first.  Transfer weight.”  Apparently walking is not just like riding a bike.

Enough about disease, for now.

Post Vacation Post

Didja miss me?  I would guess not, since I really don’t have any readers that I know of.  I’m not sure why I’m doing this, and whether any readers will ever show up.  Until I have a reasonable number of posts, and establish a reasonably regular schedule of posting, I wouldn’t expect anyone to bother checking in.

So.  Vacation.  It was wonderful.  Very relaxing, and warm and sunny.  We went to the Caribbean island of Bonaire.  It’s a little-known (except by scuba divers) and fairly unspoiled paradise.   We were there for two weeks and did 17 dives.  Ten of them were boat dives with the resort we stayed at, and seven were shore dives with our friend, who lives on the island. 

I took over 400 photographs, but most of them are crap, and I need to sort them out before I know what I’ve got.  I’m parked in the outpatient infusion department of the hospital today, to get my monthly chemo treatment, so I’ll probably put up several posts over the course of the day.  With luck,  one of them will include some fish and sunsets.

I hate this process much less now that I’ve learned there is a guest-wi-fi network.