Christmas 2006

It hasn't been a terrible day, but not a particularly good one either.

I did call my daughter and grandson this morning, left a message on their machine. As I am fond of telling everyone; I have no control over what other people do, only over what I do. Therefore I made the call, even though I didn't want to. And I was actually relieved to get their machine.

A lot of pain today; shoulders and hips. A lot of fatigue. Had to lie down for about an hour and a half this afternoon. And I didn't get dressed today. (In fact, it's been several days since I got dressed.)

Like my Mom used to say; 'you know you are sick when you have a little money in your pocket and you don't go spend it.'

Well, I've had a 'little money' in my pocket for a week and I'd love to spend it! I had planned to go out yesterday, when I was too ill, I changed the plan to today. Was going to go pick up some milk, bread, and cat food. Now it's on my agenda for tomorrow.

I like to get out. See people, sometimes chat with the friendlier ones. Look at the store displays. That kind of thing. And if I have a buck or two, buy something I 'want' as opposed to something I need.

Today I threw on my jacket and took the trash out, and considered myself lucky to do that. (It seemed much warmer out today, I'm happy to say!) There were good movies on TV this afternoon. And I had leftovers for dinner; leftover chuck roast, mashed potatoes, and green beans that I'd cooked yesterday. Yummy!

After dinner, a neighbor called to say Merry Christmas. And I felt ashamed that I hadn't called a couple of folks today to say hello. Though it's been my experience that most are with family or have made some kind of plans for this Holiday.

This neighbor also thanked me for all the 'jokes' I forward. And I was reminded that I hadn't sent out notice about 'evvy's corner' in months. Perhaps I'll do that tonight.

Some days, all you can do is 'get through' and today was that kind of day...

Parathyroid Doc - Round 3

I finally got the last round of bloodwork drawn to have a Whole PTH done at Scantibodies Lab. ($9 just for this.) Because of the 'season' will probably take forever to get the results.

In the meantime, my muscles are so weak, gait is so bad, am back in wheelchair most of the time. I have severe fatigue again, am spending a lot of time in bed on most days.

The good news? I've been doing my reasearch. I've found that 'chronic hyperparathyroidism can CAUSE just such muscle symptoms! Since I've suffered from this off and on all my adult life, you'd think I'd know all about it. But there's always something new to learn!

A good sources of info on what I'm going through, if anyone is interested:
http://www.nlm.nih.gov/medlineplus/ency/article/001215.htm#Symptoms

IP quit before she started!

Yep, the IP I just hired, who was supposed to start work today, called last night to say she couldn't take the job. She said her husband had fallen and broken his leg. That he was in a cast and she needed to take care of him (right).

First thing this morning, I called for another list. But the holidays are upon us...it could be a long time till I get someone else.

Cysto Postponed

This was the day I was supposed to have my 'inpatient' (meaning a spinal and a little sedation) cysto/retro to look for a source of the very occasional bleeding with Dr. Salem.

But last week I called and postponed it till Jan 2007. I'm just too sick, broke, overwhelmed to go through something like this right now.

This kind of procedure is especially vexing as I have no one to pick me up and bring me home as I need wheelchair transit. And the same-day surgery unit does not allow use of MTS Access!

Sometimes, enough is enough!

Another New IP

This afternoon I interviewed and hired an IP. Such a relief! My sheets are in dire need of being changed (I've been using 'chux' type bedpads on them, changing every couple of days.), and the floors are filthy.

It would be so very great if I could get someone that would stay a few months!

Tired, tired, tired

Slept in today. And slept pretty well last night actually, (no cramps in my hips) even if I do have to sleep with my left lower leg and foot hanging off the bed and uncovered.

But my muscles definitely seem to be getting weaker. Am having more and more trouble getting out of, standing up from, the chair I transfer to that's in front of my desktop. It's the strangest thing; there's no numbness, cramps, etc. I can fully move both legs, just can't stand.

When I am standing, gait and balance, ankle pain, is so much worse again. Am back to using wheelchair inside the apartment, not a walker. Bummer.

And I'm choking a lot; liquids (even saliva) goes down the wrong way. This is all getting increasingly worse AGAIN.

I think all this is getting me depressed...

More Frustration

I emailed Dr. Deftos that the lab work had NOT been done and asked him where I should go next.

Unfortunately, two days later, I got an 'out of office' for a week reply.

Sometimes I could just scream, if I had enough energy...

Docs and More Docs

First, I had the van drop me at UCSD Hillcrest Medical Center to have the 3rd (and final round?) of PTH's drawn for Dr. Deftos. Well, I was there, in the outpatient lab for over an hour. The wouldn't do the test. Said they were unable to send lab work out to Scantibodies Lab (though he had faxed them the lab request days before, guess no one actually looked at it!). They tried to call Dr. Deftos without any luck. I was so dissappointed; I feel so bad, the sooner all this gets done, the sooner I might get some relief.

Then I went to Dr. Stanton's, just in my wheelchair on the sidewalks. It was just a few blocks away, and I had allowed plenty of time, even taking into consideration being at the UCSD lab for an hour. Still, I managed to get 'semi' lost in a part of town I know well. I had to laugh, perhaps I need a GPS system on my wheelchair!

At my appointment with Dr. Stanton the Hemotologist, my Hemoglobin was 15.5, no wonder I've been so fatigued. That's a 'normal' result for most people, but too high for me. I feel my best when right at 14. I had a phlebotomy.

Dr. Stanton also ordered some labs to see if there's any reason for my life-long excessive bleeding problems, which seem to either be getting worse as I get older, or I'm just having too many accidents and medical proceedures done! Those tests (not Pro-Times!), probably won't be back for a couple of weeks, partially due to the coming holiday.

I was so tired by the time I got home, didn't even 'nuke' anything. Had a can of slim fast for dinner and went to bed with the TV and my 'burning leg', whatever THAT is...

Any good Dentists out there?

I went to the dentist today, or at least I tried to. I made the appointment two weeks ago. And I spent all morning just getting me ready to go. ($9 round trip for nothing!)

Now I need to interject that I've been going to this dentist for the past 4 years!

I got there to find that the Dental Office had moved to a completely different part of town! The offices were empty! There was not even a sign on the door saying when they had moved, or where.

So I called them from my cell while sitting on a side street that seemed to have less traffic. Sure enough, the dental practice had moved! When I inquired as to WHY I hadn't been informed of this when I'd made my appointment, or sent a card or letter, I got the usual Chicano minimum-wage-employee response: excuses and platitudes.

They then were actually upset when I cancelled my appointment! I had to point out to them that not everyone had a car to jump into and race across town, that I had SCHEDULED a return trip on disabled transit, and had to be in that location to be picked up and returned home. Even after I'd explained why I couldn't just go to their new location; she didn't get it, didn't have a clue!

I had to wait two hours for my 'ride', and luckily I was in a part of town where I could buy a cup of coffee, and window shop. Still, I got too chilled being outside that long.

By the time I got home, I was angry, frustrated, and absolutely exhausted.

IHHS

Well, my current 'provider' called me this evening and quit without giving me any notice. This one had worked a whole month!

I realize that MOST of these women only take these part-time care provider jobs to 'fill-in' till something better comes along. Still, I think they should show some responsibility to the people they help care for by at least giving two weeks notice. It really ticks me off...

In 2006 I've gone through In Home Supportive Services Providers like a chocoholic through a bag of M&M's. I can't even remember how many there have been. Or their names.

It probably takes about 4 - 6 weeks to find a replacement. The hours & energy spent getting the lists from IHHS, calling the people on the list, doing telephone interviews, setting up and conducting in-person interviews, and checking on references probably would be better spent on other items.

So not only do my floors get dirty quickly, but I have less energy for fixing meals, taking a shower, or playing with the girls. (Not to mention Blogging!) Clean laundry quickly piles up on the dining room table, delivered groceries that I don't have the energy to put away live UNDER the table, dust layers the furniture, and sacks of trash, neatly stack up on the patio chair.

This all sounds chaotic, but not so! It's my system of coping with life all by myself. A system I've developed by trial and error over the years. And somehow I muddle though; though I must admit, I've never gotten used to living in a 'dirty' house.

But one MUST have priorities! And though I don't 'like it', the above things are not high on my list anymore.

Without help, my priorities change drastically. I try to shower 3 times a week, do up the dishes every other day, the laundry I do as I can, putting it in laundry basket on the dining room table and draping things that need to be hung over a chair. I empty the trash and get the mail a couple of times a week. If my energy level is REALLY low, and my muscles really weak, I need to lie down in the middle of the day.

Often I will ignore the phone and email till I can 'get to it'.

I eat mainly microwave frozen entries, adding cottage cheese, canned veggies, fruit cups, diet jello, etc. Oatmeal, toast, eggs, and sandwiches. Easy fix, easy clean up, easy carb count stuff!

I 'pooper scoop', and feed the girls daily, as usual; but their dishes pile up in the sink with mine! And sometimes days will go by without me really 'playing' with them.

It's amazing what one able-bodied (meaning: not ill) IHHS Provider can get done in the 4 hours a week I'm 'allotted'. When I don't have it, there is such a difference in how I live, even to maybe being out of milk or some other needed commodity, for days.

A hell of a way for a perfectionist, type-A person to live, but sadly I've come to accept it...

Jake's Birthday

Jake turned 13 today! A 'real' teen now. They live outside Indianapolis, IN. A very long way from here...

Jake is my son Jon's oldest (he also has a daughter, Katie). These are my two YOUNGEST grandchildren, and now one of them is a teen!

By next year, I will not have any grandchildren under 'Middle-School' age. I feel so very old...