6-28-04 - The Dentures Dream

No pain log today... It would be redundant (everything hurts at about 5, except headache is a dull 4).

I woke this morning from one of those 'dentures' dreams...
For some reason I was getting a 'dental makeover', and when I came out of anesthesia, I wasn't sporting new porcelain veneers but a mouthful of DENTURES...
I remember being VERY, VERY upset and disappointed. I can even remember how they FELT in my mouth, grit from adhesive and all, like a pair of heavy plastic coasters...
Although my teeth are far from perfect, they're all mine, and I can still eat steak and corn on the cob with the best of them...:-)

Busy morning.... It's after 6am and I'm trying to wake up AND get caught up on some things around the house (not dishes yet -- that'll be a WHOLE DAY thing tomorrow!) as well as find a way to get my electric and phone bills paid today (shutoff on Wednesday), and also need to call my att and find out what's going on with disability (as in, anything on a hearing date yet -- it'll be 1 year next month that we appealed and asked for a hearing on my SSI/SSDI app). Trying not to feel negative and hopeless, but both missions (bills and att) will most likely be disappointments today, as usual...
I hate Mondays...

Nash wants a new bike.
He says it's because the one he's riding now is falling apart (it is, but still fair condition though) but I know it's because he's bitter about his Dad (who gave it to him way back in early 2003 -- he told Nash he picked it up off a curb somewhere and fixed it up; Nash then chose it over the almost-new red one I'd bought him the year before), who we have not heard from since he stood us up for an ice cream trip a year ago (abt. May 2003 - said he had a NASCAR race to watch).
Nash told me one night he's tired of telling his friends 'where his Dad is' so he just tells them the truth (that he doesn't know) but he takes it out on the bike (leaves it in the yard, doesn't use the kickstand, etc.) and snaps "Good!" when I warn him someone may steal it...

So last night when I found a couple extra dollars in my wallet when I went to the store I picked up two Lotto tickets for the big game tomorrow night... 210 million and counting. Wow. Wouldn't THAT be nice...
Could buy LOTS of cool new bikes with THAT, I'm thinking... :-)

And that's all I can do right now... WISH. HOPE...

Off to climb onto the Monday track...

6-23-04 - Now That I've Taken Care of THAT....

Hello, today, a Wednesday, and June 23...

June 23, 2004 AM Pain Log

Wake: 6:05am (hip & back pain, #5 headache, extreme lower ext. weakness, stiffness, extreme fatigue) (est. total 2.5 - 3 hrs. sleep - woke 3-4 times due to pain) Meds: 60mg Celexa & 1 Lasix (a daily) at 7:10am Pain: headache = 5 bodyaches = 7 stiffness =6 nausea = 0 weakness = 7 bm = 0 fatigue = 6 Notes: 1 cup of coffee with sugar/Equal/cream

Never did get to the yard sale...I was too wiped out that day (Saturday). So now I have assorted boxes of 'sale stuff' littering my kitchen, hallway and living room... Maybe next week, if the weather is good.

Last night I helped Trisha do her resume here on my computer...tokk a few hours (10pm to 1:30am), but she left happy, and with a decent resume, cover letter and reference sheet in hand. Hope it helps her get the job she's applying for (Social Services Coordinator)....
I didn't get a lot of good sleep last night. Not only was it brief, I woke sevweral times with major hip pain and weakness, along with a knot of pain in my back and shoulders that I'm sure is a result of sitting for so long last night (while helping trish at the computer). But that was on top of the several hours I spent earlier in the day burning a CD for Mike (brother); we picked him up a little after 1pm and brought him over for the afternoon.
Today I'm watching my younger nieces (they should be here any minute so I have to hurry) 'til around 1-1:30, as I have an appointment with a new Pain Doc at 2pm... Will need to get hold of Dad to take me to that, as I'm possibly getting back/hip injections for pain while there and won't be able to drive home afterwards...
Hoping for some relief.

This morning's dream was bizarre: I was in a long line, but second in line, right behind a girl who was giving the cashier (store? bank? hard to tell) a lot of trouble...you know, making the cashier look things up, filling out forms, etc.
It looked like the cashier was going to throw her out, and then...
The girl turned around, grabbed me and held a gun to my head, telling everyone (and the cashier) I'd be dead if they didn't 'put her through'...
I remember the terror and helplessness, feeling the cold muzzle of the gun pressed against my cheek and ear, and trying to remember the Lord's Prayer so I could ask God forgiveness before I died, but instead I kept whimpering and crying my son'd name over and over...he was all I could think about! My soul rated second to my son'd welfare...
Then I woke up. In a TON of muscle aches and pains. And feeling weak and dizzy from the nightmare. Glad it was just that, but feeling a lot of angst as a result...

Need to get dressed, and ready....Kat will be here with the girls soon, and the house is a mess (will try to tackle dishes first...).

6-23-04 - Testing...Will this Make it Through Today? 6-19 entry Included

So several days ago, June 19th to be exact, I had a lot to say and tried, unsuccessfully, for several hours to get my thoughts to stick to my Blog... BUT I kept getting server error messages, so glumly saved my post over to my hard drive, in hopes of posting it later.
Several hours later that day: same thing, NO BLOG... :-(

Ah well, trying again today...
Stream of consciousness isn't very effective when servers act up.

Will edit this in a few, IF it goes through....
(big sigh)

Okay, it works... So this entry, below, is for last week (June 19th):

6-19-04 - Beautiful Day but with Heavy Morning Fog

June 19, 2004 AM Pain Log

Wake: 6:15am (hip & left knee pain, lower ext. weakness, stiffness, extreme fatigue) (est. total 4.5 hrs. sleep - woke only 1 time due to pain) Meds: 60mg Celexa & 1 Lasix (a daily) at 6:20am Pain: headache = 1 bodyaches = 4 stiffness =5 nausea = 0 weakness = 7 bm = 1 fatigue = 7 Notes: 2 cups of coffee with sugar/Equal (cutting back on the asp. sweetener)/cream

How new is this? I'm once again putting off getting work done as I write this...
I promised Connie E. I would be able to help her out, for a show she's setting a booth up at, by doing some drawings for her (of Door Country, Wisconsin... lighthouses, sailboats, harbor, bluffs, etc.). I did spend a few hours on locating and saving pictures yesterday. I'm supposed to be manipulating them in Photoshop right now, so I can print them out and do pen and ink drawings from the staged prints... They're to be 'coloring artwork', so she can sell them with plastic mugs that have inserts...the kind kids can color before they slip the paper insert into the lining of the mug...
At one time, the whole project would have taken me two or three hours, tops. Now, I stretch these mini-projects into days and weeks, if ever.
It's the FOG that makes it impossible in the morning for me to do much...thinking is hard enough, but CREATIVE thinking? I wind up only making myself more frustrated and depressed...
I also promised Nash that we would put together a Yard Sale here today...the weather today is to be GREAT (clear and sunny but with a temp high of only 71!), but I'm so sore, stiff and TIRED I am having trouble just sitting here typing, let alone getting dressed, moving boxes around, setting things up outside...

My garden is nice this week... both container roses are in full bloom, yellow and white, about 3 - 4 blooms each and more coming. The red Blaze (climbing) rose is in between right now, as I deadheaded the old blooms last week. New buds forming, though. The Camellias finally started blooming (nice, but not what I expected), and the Morning Glories have arrived. A couple of the Glads out front are getting ready to blossom, and I had to cut back some of the 3 Clematis as they are becoming a monster that threatens to topple their trellis... I wish I could have somehow managed to get the Pergola built on the deck this Spring. Next year....

Yesterday I had more labwork (blood drawn) at the hospital, for the upcoming visit with a new Doc (Benyama?) Tuesday. He'll be giving me injections in my spine (for pain), too. Hoping there'll be some relief there. The ones Dr. Li #1 gave me in Feb or March didn't do anything (long term), but in fact made me worse the week after...
I'll have to check and see if I have another appt with Dr. Li #2 coming up. She was the one who put me on the Lasix, for my spinal/brain pressure. The monster headache is all but gone (just a dull, FULL kind of ache now), but the 'clicking, popping and fizzing' I keep hearing in my head (when I move my head or neck) bothers me TERRIBLY. I've noticed the spasms of 'facial numbness' have not been around this past month, so maybe the Lasix treatment is helping?

Really broke this month, as cash assistance was dropped in May and now we have no money at all coming in. Dad is nearing 80, and has helped me all he can, but it sickens me to have to watch him pay my rent AND utility bills the past couple months... Everything's on disconnect or 90 days past due...
I keep thinking, when I am outside mowing the grass or watering my garden, that maybe I can find a 10 or 15 hour a week job taking care of plants somewhere...but then reality hits: I can't even keep up with my own little garden! The weeds have been unpulled for a month now, and there are bugs eating away at my Petunias and Hollyhocks, and the Rhododendrons are sick and dying. I just don't have the energy 4 out of 7 mornings to even care how to fix those things, so that tells me I'd only make a boss extremely unhappy if I were doing this for a part time job...
Have not heard from my att in several months...know it's about time to give him updates, but I don't even find the strength and energy to gather papers and notes. I wish he'd call me and tell me we have a hearing date (it's been almost a YEAR since our appeal for a hearing on my disability claim)...

Damn, have to get SOMETHING done this morning (besides this)...

6/7/04 - Not That I Forgot...

Oh, pain log time... I added 'concentration' as a point to consider, and noted this week's daily meds:

June 7th, 2004 AM Pain Log

Wake: 4:30am (HEADACHE; neck, back and hip pain; lower ext. weakness, stiffness; ) (est. total 4 hrs. sleep - woke at least twice due to headache and body pain) Daily Meds: 60mg Celexa; Lasix; Flexeril(3X); potassium; Premarin; ^Darvocet; ^Butabital; ^Advil; ^Tylenol (^ = 'as needed') Pain: headache = 7 - 8 bodyaches = 6 stiffness =6 nausea = 2 weakness = 6 bm = 4 *concentration = 6 Notes: 2+ cups of coffee with sweetening/cream

6/7/04 - Under Pressure...in more ways than one

It's Monday, another weekend behind me. Anymore, the only difference between the 'week' and 'weekend' for me is whether I can possibly see a Doc right away if my pain and/or symptoms warrant it...
I've been taking the Lasix and potassium pills since Friday now, but feel no difference (pressure in head, never-ending headache, weakness) except that now my bladder has me in the bathroom every fifteen minutes 'til noon... The headache is no longer a thundering roar, but diminished to a pounding jackhammer. I guess that's improvement, though...
I do know that, from what I've read about 'intracranial pressure' (pseudotumor?), this increased pressure in the brain is a serious thing. And that makes me worried because everything else continues to work in 'slow motion': my Doc has me scheduled for more labwork on the 18th (3 weeks??) and a followup a week after THAT...
The blurred vision spells are getting more frequent (hourly or less) and my hearing is like I'm 'under water'. I'm also 'seeing things': like a movement that isn't there, or shapes that make no sense ('til I study it long and hard and see that it is a bookshelf and its shadow, for instance).
The 'heavy head' is the worst, though, as it feels like I'm balancing a watermelon on my stiff and achingly painful neck, with little crackles and 'ticks' constantly going on in the back of my head...

Perhaps the worst of all of this: I feel I'm becoming more 'crippled' by the day: it was bad that, before this all got worse, I had to make dishes wait a few days at a time, and that housecleaning had become a 'sort of once or twice a month' thing, but now... I managed yesterday to 'sort' the dishes to get them ready for washing, but tired quickly, and hope to actually get to washing some of them today. And the carpet needs vaccuuming badly (thanks to my shedding kitties). This room (computer room, we call it now) is so cluttered I barely have a 2 foot by 6 foot patch to navigate in (it's tight in here anyway, with two desks AND a large drafting table and 2 bookcases) without bumping into something (Cd's falling everywhere, papers that I thought were important enough to print that wind up on the floor under my chair, etc.).

It's enough that I feel GUILTY for the half hour or so a day I squeeze out of my reserves to water and look after my flowers outside...

The 2nd Clematis (Magenta) has begun to bloom, and all 3 have all but overtaken one side of the deck... Both container roses are building nice new buds, and the climbing Blaze rose has already produced NICE clusters (and continues)... One of the little potted Hydrangea starters, the white one of the three (Red, White, Blue) has had a crown of white blossoms for a few weeks now, and it's only a four inch tall starter plant!
I sprinkled some wildflower seeds in the back by the gas meters, and finally got around, this past weekend, to putting the Lupine and Columbine starts in the ground back by the shed...
And I finally recharged the batteries to my digital camera this weekend, tested it with a few pics of my flowers...it works fine! That's a positive thing.

I just wish I could concentrate more and get some WORK done (have a few things that have piled up, going on a MONTH now), so I don't completely lose credibility and strand myself completely. A friend of a guy I did work for in the past has wanted me to give him some ideas, do some work on a new wwebsite for him, and I can't think straight long enough to get anything done on it...

Caught myself looking at the clock again -- hard to remind myself that Nash doesn't need to wake up now (5:30am) to get ready for school...SUMMER vacation!

Need to reset a few minutes, try to get something REAL done this morning...

A Cottage greenhouse - this is a picture that makes me feel good. I love gardening these days, and wish I was able to do more with it. 

Catching Up (Right)

So I saw my Neuro Doc the other day about the results of the LP (spinal tap),
Turns out (why didn't I know THIS was coming?) everything 'looks normal'.
BUT, she said, my pressure is slightly elevated,
Okay...intracranial pressure is elevated. Something about a 'pseudotumor' (which I know by now means it's not really a 'tumor'). And prescribed me water pills (Lasix) to try and decrease the pressure.
No layman's explanation, no plan of attack...just another 'let's give you something to RELIEVE THE SYMPTOMS' instead of 'let's get to the bottom of this and find out what's causing the problem and fix THAT'...
Kat's right (my sis, who's also a Nurse): I place too much hope for 'magic' in the hands of my docs...

The headache has become a permanent tenant in my skull, although a little quiter now and then. It makes odd (and disturbing) noises in the back of my head (creaks, crackles, crunching, ticking). And the back of my head hurts, too, above and at my neck, making it hard to turn my head well (and more noises)...
I feel like I'm under water, right at that point where you know you HAVE to go up for air or ELSE. Full, tight like a watermelon, and heavy as one, too.
It's affected my hearing in much the same way: feel like I'm hearing in a 'muffled' way...
Know this isn't really 'possible', but when I touch my head (sides, top, back) it feels 'squishy' where I press with my fingertips. I've had a slight fever off and on since this all started over a month ago...
AND, strange things happening to my hands: my fingers are aching, swollen and -- PEELING! -- just above the cuticles... It's as if I woke up two mornings ago with this, and it's worse this morning (more fingers affected).

It's 4:30am (well, 4:50 now) on a Saturday, and I shouldn't be up at this hour, but Kat's bringing the girls over for the day (and tonight) on her way to work this morning, so I wanted to be up and about an hour or so before they get here.
I need my 'coffee time', that first hour or so of being between night and day (almost said between 'sleep' and awake' -- ha! That's ALL NIGHT...).

Nash has his first week of summer vacation under his belt now. He'll be in 7th grade this Fall... becoming such a young man. He's a handful, buthe makes me proud.

Too tired to do my pain level chart thingy this morning... outside of my back, hips, elbows and head hurting (as usual), and with some weakness in my legs, today might be one of my 'good' days...