40 Days of Thankfulness: Day Twenty One

Today, I'm thankful that I got to see a friend I haven't seen for a while and we got to play several piano duets. Neither of us was quite as rusty as we thought we'd be.

40 Days of Thankfulness: Day Twelve

 

Today, I am thankful for Saturdays.  It' the one day of the week I don't have to be anywhere, do anything.  I can do webwork, if I want, but I don't have any deadlines. 

I never have doctor appointments on Saturdays, no medical testing.

No piano students.  I don't even talk to prospective students on Saturdays.

It's a day for maybe brunch, a trip to the farm, maybe a little TV, maybe (most assuredly!)  a nap.

Saturdays are family days, even though our family is smaller than it was.

Saturdays are always full of promise.

Off to see what today's promise is...

Twenty-two Years

Today is the twenty-second anniversary of my pituitary Cushing's surgery.  It seems like I should be feeling better by now, right?

Sure, some things are better although I'm hard-pressed to say which.

My endo says I don't have Cushing's anymore, so that's a good thing.

I do have a growth hormone deficiency, I'm panhypopituitary and have adrenal insufficiency.  Kinda like the old jumping out of the frying pan into the fire.

One thing cured, 3 others added.  Hmmm - I'm not sure I like the math.

Supposedly, I have a slightly longer life expectancy because the tumor is gone...but the GH deficiency can take away up to 5 years, the kidney cancer can take away more so I'm losing ground on that, too. 

Because of the cancer, I can't do anything about the GH deficiency.  Because of the treatment for the GH deficiency, I might have gotten the cancer in the first place. Catch 22.  Interesting that this phrase coincides with the anniversary number.

Then, I often wonder - is life expectancy only about years? What if there's no quality?

The New Year

So, the New Year is going.

I haven't kept any resolutions but, then, the ones I "made" were the ones I always do - exercise more, eat less, drink more water, tidy the house more.

I think that those are all kind of hopeless.

I think I'm doing generally better than I was last year at this time.  My counselor thinks I am, at least doing better than I was two years ago.

We both think it's maybe because of my part-time, temporary job.  I'm getting out of the house more, being with people, getting away from talking about Cushing's all the time and working on the computer with websites, news items, blogs and whatnot.

So, I'm working more and napping less but I seem to be getting it mostly done.  I was never great with housework so it's hard to tell if things are worse or not.

I am teaching piano less than ever.  I hate to give it up completely, though, just in case.

Today, Friday, is my day off and I so enjoy this - although I'm catching up on Cushing's work.  All the new bios and accumulated news items through the week.

What will this year bring? 

Will I get more energy somehow? 

Will I decide to work part-time on a more permanent basis?  Could/should I even think of that? 

Will my family stay healthy?  No more strokes, cancer, unknown issues!  Will we travel more like we always say we will?

Tune in as all these questions are answered!

Decisions, decisions

Although this was not completely unexpected, I have been asked to be the interim assistant music director of my church. Prior to being asked, I had always thought that I would turn this position down immediately but now I find myself thinking about it. I have said that I would call in my decision on Monday so my weekend is cut out for me.

When I did the music camp that wiped me out, that was 15 hours a week plus a couple after-camp meetings. Could I do that every week plus an additional 5 hours sometime during the week?

I already put in quite a few hours during the school year. I currently usually play bells on Sundays (2) and I often sub in a youth group (1), have 2 bell rehearsals on Tuesday (2), have a rehearsal on Wednesday (1), children's handbells and play piano for another group on Thursdays (1.5). That's 7.5 hours already and more than enough to add to the time that music camp was.

Could I, with my nap schedule, pull all that off?

This is a temporary position. When a new music director is hired, the current acting music director will resume her "real" job, which is the one I would be doing. Hopefully, a new permanent director will be hired soon.

My ideal thing would be to say yes, get the prestige, such as it is, of having this job, then they hire someone who starts the beginning of September so I never have to actually do the work.

As a volunteer, I can always say no to coming in for an extra rehearsal. As an "official person", I think I would have less leeway to do that.

I have worked with the acting music director for many years and we work well together.

Other than the schedule above, I can set my own hours.

This job involves emails, computer scheduling, other computer stuff, all of which I can do easily. If there's any recruitment, I don't think I could do that.

The acting music director says that she will help me with repertoire since she is very aware what they have in the library and I don't. I would hate to choose music only to find that that choir had just played the piece in the spring.

I need help deciding - what should I do?

Depression

I feel it coming on, again. I'm not sure if this is a cyclical kind of thing, that I'd have it no matter what about now.

I think that the party on Saturday helped to trigger it, though. I never feel comfortable around others, especially people I don't know at all. I never know what to say and I have trouble answering questions. Other adults work, have important jobs. What do I do? I teach piano and have some websites. WooHoo. Practically everyone and her sister has a website now. That can't possibly be a job.

Sometimes my husband tells them about the Cushing's sites. But that's still not "work" surely.

I think all this adds up to me becoming depressed so often. I don't feel like I contribute to society, I don't have an important job, don't travel to exotic locations to be an expert witness, don't produce PowerPoint slides and Excel spreadsheets every day.

My life consists of a little piano teaching, some web stuff...and napping/sleeping. What kind of life is that?

I don't see it getting any better, either - I've been sick for 25 years, over half my life. The only thing that might have helped me (but didn't) was the growth hormone. Now, thanks to the kidney cancer, I can't take that, either.

I'm just taking up space here, killing time, wasting family money.

I sure hope this depression passes quickly this time. I just hate feeling like this so often.

Vision(ary?)

Yesterday, I went to a friend's to play piano duets. I put in my contact lens. I only wear one most days. When I ring handbells, I wear a special "bell lens" in my left eye so I can read music across the bell table.

Anyway, when I left for my friend's house, my vision was a little blurry but I figured it would clear up during the drive. I even went in the house to take out just to be sure it was in.

Luckily, I know the way really well so I didn't need to read any signs or anything. I mentioned my blurry eye to my friend and said it was lucky I had an appointment with my ophthalmologist Thursday. She said she had one the same day but her's is 8:30 and mine is 9:30 so I guess she'll be doing the eyedrop thing when I first get there. Very strange that we should set up such similar times.

An aside about my ophthalmologist...I've been going to him for nearly 28 years. My husband first found him when I was playing the organ at this little church. I had been there practicing on a Saturday and the minister's cat came in and walked across the top of the organ. I am very allergic. When Sunday rolled around my eyes were glued shut. I had to call around for a substitute organist and my husband called around for an eye doctor. On Sunday morning, there weren't any and our local hospital hadn't been built yet so there was no close-by ER to go to. This doctor, who had never seen me before, agreed to open up his office and see me immediately.

I have been indebted to him ever since and I've told all my friends about this kind doctor. When I was first scheduled for NIH testing pre-op, I told them that I couldn't come for that start date because I had an appointment with this doctor and I didn't want to break it.

[aside over]

Anyway, I got home and checked the case - I had the correct eye cover off and the right eye lens in.

So, I took the lens out, cleaned it very carefully and soaked it over night. Today, the eye was blurry again. On a hunch, I tried the lens in the left side of the case and it worked.

Guess I must have been so tired when I took out my left lens on Sunday after ringing bells that I put it in the right side of the case without thinking.

Today I have a massive headache, probably from squinting all yesterday.

At least I'm not going blind, just yet!

2:30 - The Dental Time

Ok, my teeth weren't hurting but it was time to go back.

I have put off going to the dentist for a couple years and I have a couple things that really need to be taken care of and I'm terrified.

When I was a child, the dentist tried a new thing on me - drilling cavities with only a headset to keep out the noise. I wasn't supposed to feel any pain that way. I was feeling pain and kept turning up the sound to try to help. The dentist could also hear my music and he didn't like it so loud so he would turn it down and I would turn it up.

Finally, I bit him.

He sent me out of his office and told my parents never to bring me back. Instead of supporting me, my parents were mortified, I was punished and I never went back to any dentist until I was in High School.

Since then, I've done ok, but I have a really small mouth and a very big gag reflex.

In spring, 2006, I was eating GrapeNuts, the hard kind, and cracked my bottom tooth. That left ragged edges and scratched the underside of my tongue and cheek during the night. Felt like my tongue was swollen on the underside.

Naturally, this was the one weekend that my dentist was out of town. I saw some substitute dentist on Monday morning.

Swallowing hurt, and I think I was talking funny (Julia would say funniER, especially if the dentist was from New York!)

Actually, my tooth didn't hurt at all, but it was the jagged edge that was cutting under my tongue, making it hard to talk, swallow and eat.

Probably this incident set off several others, too.

Monday morning I was nervous about this upcoming dental stuff, worried about Sue (who had lung cancer at the time) and other things. I woke up on Monday with a mild sciatica attack and a stomach ache from living on soft pudding and such.

When I got to the dentist's office, his whole front parking area was torn up, construction vehicles everywhere. There was a big sign, a floppy one, blowing in the wind, that was hard to read but I could see something about parking in the back so I turned the corner looking for a back way in.

Naturally, the office complex said NO Parking for Dr J's office. So I kept going. Ended up back where I started from and called the dentist. Turns out I was supposed to weave through the construction equipment and workers. In the back was very little parking so I squeezed my car into a place where I was sure it would be hit by someone else backing out. Fortunately, that didn't happen.

The doctor shaved down the tooth some so the scraping wouldn't continue and put down some kind of plastic sedative film over the whole thing until the real work could start. They couldn't do a whole x-ray because of the pain under my tongue. So they're not sure if I need a root canal or not - I would bet any money that I do, since that's more $$$ for the dentist. They wanted to put in an implant for $3,500 but insurance doesn't cover any of that. The root canal sounds like a bargain. That was to be a 2-hour appointment in March, 2006.

So I left there, still not able to talk much because of my tongue, and went to my mother's to try to convince her to cancel my piano students for the afternoon. By then I couldn't talk and I was limping from the sciatica which was getting worse.

A friend of mine gives me her old Wall Street Journals to give to my mom. I thought that taking those up to her would be a good bribe so she'd call my students. She hates making calls almost as much as I do.

Taking the papers out of the car, I somehow managed to hit my eye with the corner of the stack of newspapers. Now my eye wass in pain, tearing and it was hard to see.

So, I limped up 3 flights of stairs, half-blind, sore mouth, mild stomach ache. I promised my mom that it would be mostly answering machines - no worries about talking to actual people. Of course, you know that only one turned out to be a machine!

Went home, took a much-needed nap.

Tuesday, I woke up in excruciating pain from the sciatica. It was the worst I had ever had this. I called my doctor's office and luckily he was able to see me. He thought that all the stress that's going on right now contributed, as well as sitting in that dentist chair all tense.

Finally, I had 2 new meds to make everything a little better, but they knocked me out and made me dizzy.

But things were getting better. My eye stopped watering and I ccould see again. I wasn't getting any more cuts under my tongue. And I could take my meds and go back to sleep.

I made the followup dental appointment and planned to go but then Sue died. I had thought that I would be going to her funeral and so on, so I canceled that appointment.

Then, the tooth seemed fine, so I put it off.

Then, in late April 2006, I found out I had cancer myself with surgery in early May. One of my diagnostic tests was a bone scan to be sure that there was no cancer in my bones. The next evening, I was playing handbells during a rehearsal and a crown just fell off. I figure the radioactive stuff or something made the bond weaker.

Sometime in June or July a crown on the other side came off. Eewww.

I figured the cancer was bad enough so I was taking the year off from my dental woes. I wasn't even sure I was going to survive the year!

So, here we are in July 2008. The receptionist had called to schedule my husband (who wasn't home, of course!) so I bit the bullet - no pun intended - and said that I was about 2 years overdue. I told her about the gag reflex and that I needed to have sedation.

So, the check-up, cleaning, X-Rays, estimate and all took place this afternoon. There were no problems that I didn't already know about - the missing crowns and such. Estimated cost, over $8,000. Part will be done this year (maybe! maybe I can draw this out another couple years...) and part next to take advantage of insurance.

Thank goodness there's no pain, and there weren't any new problems!

Golden Oldies - Posts from the Past - Part 4. The final one!

Feb 20 2007, 04:20 PM

Wow! I guess I haven't been on the boards for 2 weeks or so. I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent

My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o

I came home and taught my piano students, as usual.

Tuesday morning I woke up and my back hurt. I assumed it was from the cold combined with my arthritis. That got worse throughout the day so I called my PCP. Naturally, he was away until the 19th but had a substitute I could see Wed. I didn't want to wait because the pain was excruciating by now and I couldn't get out of chairs or sofa without using the walker I had from surgery to help pull me up.

So I called my husband at work and he said he'd come home and take me to the ER. I had been supposed to have handbell rehearsal that night so I called my director and let her know I wouldn't make it. She assumed that Tom (husband) would be home sooner than he was, so she got the associate pastor from my church and they headed to the ER to wait with us.

They asked about me at the front desk and were assured that I was there although they didn't see me. I guess they thought I was with the triage nurse or something. So they waited. Then a Melissa O'Connor was called... My people realized it wasn't me and left.

Finally, Tom got home - he had really important work to do (sarcastically said!) and I got to the ER about 6:00PM. Last time I was there, they told me I had kidney cancer, so I was hoping that there was no rerun of that experience!

The triage nurse let me wait on a gurney instead of one of the hard plastic chairs in the waiting room.

Unfortunately, they also wanted blood and urine. My only good arm had been used by the neurosurgeon the day before sad.gif Luckily the nurse finally got the IV in to my other arm. I guess my veins are a bit better post-Cushing's. No collapses this time.

They did CT scans (so I don't have to do my surgeon's ones - YEA!) and XRays and found basically nothing except lung nodules that hadn't grown much since my last scan - say what? I didn't know I HAD lung nodules.

I got some percocet and they sent me home with orders to see the sub PCP in 2 days. The percocet didn't do much except make me sleepy/groggy. My days were spent watching TV and sleeping. Even sitting at the computer or the table was too painful.

Tom took me to the sub PCP on that Friday and she's sending me to physical therapy.

Until yesterday, I didn't drive at all, and the weather has been awful, so I haven't even called about the PT yet.

There is still a little pain, and I need the walker to get out of bed, but I'm doing much better.

A weird side thing - Tom was driving my car since it's a van and much heavier than his midlife crisis sports car. The van does much better with snow and ice that we had the last couple weeks.

One day he got it home, slammed the door - and the window slid down into the door. Somehow it got off the tracks. Luckily the glass didn't break. So that was a bit of a problem and $. No one had ever even heard of this problem before.

Anyway, I hope to get to your PMs, emails and whatever ASAP!

It feels a bit weird being here - like my baby has grown up, left home and doesn't need me anymore. Can you have Empty Nest Syndrome for message boards? LOL

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Last of the Golden Oldies