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I mailed my Christmas cards today. I finished my Christmas shopping over a week ago and even did some of Dad's shopping. Now all that's left to do is to wrap the stuff. Make the Chex mix (about 12 gallons worth....seriously). Help put up our Christmas tree. Put up Dad's tree and decorations. And.....
I hate the holidays.
No, not really. But I just wore myself out thinking about all that's still left to do. So okay, our tree will go up this week and I'll do Dad's this Saturday. I'll start wrapping a few things every night and be finished with it in no time. The Chex mix takes about two days. Not so bad, after all! I feel better already!
So I trust that everyone had a fabulous Thanksgiving. Ginger had a nice, quiet day at home with herself, the cats, and close to a 2-pound lobster that I named Leroy. I gathered with most of my family at my sister's. You would not believe this turkey she cooked. Perfection in every way. I don't even like Thanksgiving turkey and I smacked my lips all over a big ol' chunk of it. I'm more of a Thanksgiving side dish person myself. Give me a bowl and I'm all happy. Some dressing/stuffing in one side, mashed potatoes in the other, and globs of gravy over the whole thing. Now that's what I'm grateful for! No pumpkin pie for me. I'd rather have a vat full of carbs any day.
Yes, I know it's been quite a while since I last posted. I've been working, gracing the doctors with my presence....you know....the usual stuff. I saw Dr. Dracula last Monday and I see Dr. OhMyAchyBody this Thursday. I'm now up to 41 tubes of blood and half a dozen finger pricks. Do we know what's wrong yet? Of course not! Wouldn't that just be too simple? My parotid glands have been so swollen off and on the past few days that I'm starting to look like some chipmunk's fat-faced aunt. The sleep machine and I are not being very cordial to each other these days, but I'm trying. Oh yeah, I had my yearly mammogram! Woohoo! The technician flopped my big left one up on the shelf, pushed the button to start the big squeeze, and said "Tell me when you think you can't stand a bit more pressure." I yelled, "Boy-howdy, this is it!" (or the polite equivalent), and she added a couple of more big squeezes. She had the shelf moving so much that I was standing on my tip toes, hanging on by a niblet, bless her heart. But she got good pictures and everything was clear. I was mightily relieved. But next year, I think I'll just lie down topless on our driveway and have Ginger back her car back and forth over the girls a few times so that I'll be better prepared. :-)
And now it's Christmas. Like I said, I mailed my Christmas cards this morning. I've already received one from a couple of my cousins. I love Christmas cards, but those yearly Christmas newsletters are another thing. Most of them are okay, but then you get the ones where you hear about every move the children make plus how many times the dog piddled during the year. Not so good. I keep thinking that I should put a holiday newsletter in my cards, but my life is so boring that no one would want to read it. However, it has occurred to me that I could lie! Then I would have a fabulous, interesting newsletter that would read something like this:
Merry Christmas, Hanukah, Kwanzaa, Solstice, Harvest, Eid, you-pick-your-holiday, to you! I pray that God, Moses, Abraham, Glinda the Good Witch, Buddha, Mother Nature, you-choose-your-higher-power, has blessed you generously this year. This has been an exciting year for me, but please don't believe everything you hear on the news or read in the newspaper. I would explain most of it, but it's really none of your freaking business. Sorry. I get a little high strung when I think about it. So anyway, I finally found a job, praise the Lord, Mohammed, and Charlie Brown! It's only part time, but I'm hoping it leads to bigger and better things. Now that I have learned the 25 ways to clean a public bathroom, I've been promised that I will move up to scrubbing the toilets at our local prison. This is a good thing because now I can visit our little Bobby more often. I told him over and over again that smashing the front window is no way to break into a store, and that he should either pick the lock or hide inside until everyone has left. But would he listen to his mother? No way! At least now he has 3 good meals a day and a place to lay his head every night. Our youngest, Bedelia, just had her sixth child. We're not sure who the daddy is this time, but we just love this little cross-eyed angel. Bedelia is working on getting her GED and will be able to study more hours once she gets rid of that awful itch of hers. The doctor said he's never seen anyone get that many different varieties of this kind of rot, but he's sure he can clear it up within the next year or so. In the meantime, we made these cute cards out of construction paper and ribbon to send to everyone that she's been extra friendly to in the last several months. As for Big Ed, that good-for-nothing-useless-piece-of-crap has done walked off and left me. Praise God and Yoko Ono! With any luck, I can get the locks changed before he thinks of coming back! And me....what can I say. The surgery went well, but I'm still wearing my Reynolds Wrap hat just in case the aliens try to take over my brain again. But since it's Christmas, I've put a pretty red bow on top of it. Bing Crosby! And Happy New Year!
Well, that's the news in my little world. I hope things are well in yours.
I was reading a news article online a few minutes ago that had the phrase "the cleavage to survive" in it. Wow, I thought, how does one acquire the cleavage to survive? Life is hard. Just getting through the day is no picnic. Do I have the cleavage to survive? Look at my picture. My boobs really do point to my arms. There's no cleavage there! Oh my gosh, how can I go on without the cleavage to survive?!!
Keep in mind that I was wearing my reading glasses. That my face was only about 14 inches from the screen. That sometimes I'm just a big, ol' idiot. It was "courage." The "courage to survive." How the heck did I get "cleavage" out of "courage"?
I've been doing that a lot lately (or, at least, it seems like a lot). I don't know if I'm actually seeing the wrong word or if my mind is giving me the wrong word. I'll go to say "it's in the fridge" and it comes out "it's in the stove." I head to the bathroom to move clothes from the washer to the dryer. The washer and dryer, however, are in the laundry room, not the bathroom. Completely opposite ends of the house. I'm in the middle of a sentence and can't remember what else I was going to say. I'm in the middle of a sentence and can't come up with the word I want. I walk through the parking lot at work, up one aisle and down the other, because I don't recall where I parked my car.
I would love to come up with a raunchy cleavage joke right now, but I don't know any. I can tell you that I stopped wearing a bra the day after I graduated from high school. I wore one again for about the first 6 months after I got the job I have now 22 years ago. I don't like bras. The band hits right on my hiatal hernia and that's not comfortable at all, believe me. So I wear nice thick sweatshirts in the winter and big loose t-shirts in the warm months. If I ever lose this gut I have, the "girls" are going to hit the ground and get sidewalk burns. Right now, they're safe "on the shelf", so to speak. I just don't know how women can stand to be all trussed up like that.
I don't understand a lot of things. How about pole dancing? Who was the person who thought, "Hmm, I'm tired of dancing on the floor, why don't I wrap myself around a pole?" Who thinks of stuff like that? I can just see me pole dancing. I'd need a step-ladder to haul my fat ass up the pole, and God knows I better vaseline my thighs or I'd be stuck up there for days. Can you imagine the thigh burns? How would I explain that to my doctor? "Well, doc, you know that metal allergy I have? Uh, yeah, uh, I was dancing on this pole, see, and...." Oh, I can just see that now. Which reminds me of the time my friend got poison ivy in a place that will make you cringe. She had gone camping at a very primitive camping area. The forest was the bathroom, know what I mean? She went out into the woods in the middle of the night for a number 1 AND a number 2, and then used a handful of leaves for toilet paper. Yep. A very bad case of poison ivy down on the farm. That poor girl was miserable for a month, which is why we should all camp at Holiday Inn. :-)
Getting older is so much fun. Can't see crap and half the time you're constipated. Vegetables give you diarrhea and you get no warning anymore when you're about to fart. I used to be so embarrassed about that. I'd be heading down an aisle at Kroger and toot one, and my face would turn 50 shades of red. Now I just let 'em blow as loud as they want. I figure if I'm going to do it, I may as well announce it. I've started saying, "When I was your age...." and I call anyone up to 35 years old "kid." My hair is turning gray. My chin keeps growing 2 dark hairs on it. I yank 'em, they grow back. I yank 'em, they grow back. I swear that after I die and am buried in the ground, those blasted hairs will still be growing. The 3-year-old granddaughter looked at me the other night and said, "I don't like that face." It's okay, sweetie, I'm not too fond of it myself. :-)
So.....the Annual Jamie Lee Curtis Halloween Film Festival has begun. I only got to watch one movie this weekend because the 3-year-old was here and then I went on a date with Dad and his lady friend today. Nothing like double-dating with your father, I always say. Anywho, I began with the Turner Broadcasting version of Stephen King's "Salem's Lot". One of the big 3 companies did "Salem's Lot" many years ago with David Soul in it. It wasn't a whole lot like the book. TBS did it and it was much better and scarier. I'll also be watching Jamie Lee Curtis (the official Queen of Scream) in "Halloween" and "Halloween H2O." Then there will be Adrienne Barbeau in the original "The Fog" followed by the remake of "The Thing" with Kurt Russell. That movie scares the pants off of me. I haven't decided what else I'll be watching, but you get the idea. Scary movies in my pajamas under a blanket where the monsters can't see me, lots of Diet Pepsi and snacks.....it doesn't get much better than that!
Have I mentioned that both of our cars are being recalled by Toyota? Now THAT's scary!
I just spent the last hour blogging about what's been going on and why I haven't posted lately, and then my laptop ate my post. So rather than try to recreate all that, let me just say that I've had a bad bout of fibromyalgia and depression for the last couple of weeks and couldn't do much of anything. But the physical pain is starting to ease, and I've worked through the depression and am feeling better in my head, so I'm back.
Stay tuned for the next post in which you will learn about my annual "Jamie Lee Curtis Halloween Film Festival" and whatever else comes spilling out of my brain. It may be 2 days (or so) before I post again, but that's because I'm getting new bedroom furniture and I'm going to be busy getting the old stuff out, the new stuff in, and setting up the room. It's going to look "mahvelous"! :-)
The ride to work this morning was exciting. The woman in the car in front of me was looking in the rearview mirror and applying her mascara. The woman in the car in front of her was texting as she drove. We were all moving at 45 MPH. It's at times like these that I feel closest to the Lord. "Dear God," I prayed, "if I'm killed this morning because of these two women, please let me live long enough to beat the holy crap out of both of them. Amen. Oh yeah. Please help me be a nicer person. Amen."
This was one of the few mornings that I didn't do things "my way." My way would have been to pass both of them, give them the happy one-finger salute, call them a few names that I shouldn't think much less say, and then leave them with a wide grin on my face. Instead, I did a "half-way" and made snarky faces at them in my rearview mirror as I blew past them. I let 'em off easy. Wonder what's wrong with me!
Let's see.....that was the Starland Vocal Band who did the song "Rear View Mirror" (written by Bill Danoff and Jon Carroll). "There's got to be a Heaven somewhere...I hope I know it when I get there...I can see my life in a rear view mirror (but I don't see Heaven)...and I don't see Heaven getting any nearer". Or something like that. I couldn't find the lyrics online. Anyhoo, this group was truly a vocal band. They played their voices like instruments and their sound was amazing. Not many groups have that kind of harmony and fabulous vocal arrangements. The group "Ollabelle" comes close. For pete's sake, you haven't heard of Ollabelle? Get your tush down to Barnes & Noble and give them a listen. (Have I mentioned that I started off as a music major in college? Well, now you know. I'm a geek!)
Sometimes I just want to moon somebody! Whew, I feel better now! Confession really is good for the soul. Who knew? I wasn't planning on getting into that tonight. The whole mooning thing is my little secret. I find myself wanting to drop my drawers and flash the cheeks in the oddest situations and places. A couple of weeks ago, someone at work whom I don't care for (no one that I work directly with, in case someone I do work directly with is reading this) made the snidest remark to me in the elevator. I had the strongest urge to lose my pants, bend over, and give her the universal sign for "kiss my ass butt, you piece of shit fecal matter, yes, you." Of course, I didn’t do that because I’m a grownup (sigh) and a professional (I'm grateful to have a job). Of course again, being a grownup and a professional doesn't keep me from declaring a "bitch alert" every time I see her.
My brother Steve wants to know how DVDs know what screen size your TV is. ("This film is formatted to fit your screen.")
I see Dr. Dracula again next Monday. This time, I'm thinking that I'll just keep all my blood for myself. That'll fix him. :-)
And somebody please explain this "Jersey Shore" to me. A judge called this Snooki person a "Lindsay Lohan wannabe" or something like that. When I see her, the word "skank" comes to me and that goes for "The Situation", too. I would love to be in charge of the world for just one day. I'd be tossing lightning bolts at people like them all day long. Paris Hilton, too. Some people are just a waste of space on the planet and I'm getting tired of them breathing my air. I'd fry up those two idiot ministers in Florida and Kansas and use them for pig slop. Then I'd send just about the entire Congress to live on another planet and start our government over with people who have some sense and sanity. And I'd do all of that just in the first hour.
So I'm thinking about writing my own funeral. That's not as weird as it sounds. Think about it. You're lying there dead and people are talking about you and telling other people how you were and who you were. Uh-uh, not at my funeral. There will be things that I'd rather tell and say myself. And I want to choreograph it. No, not dancing. The order of things and what's done. There are certain songs that I want to be played at particular times and certain people whom I want to read my words. Yep, I'm thinking that I need to put it all together myself, so that it's really me and it's done how I want it. I know who I am and I know what I am, and I should be the one to tell the story. So when I die, you may not want to miss my funeral. It should be very interesting.
It's late here now. Blogger will say that this was posted at 10:01 PM, but it's actually just after midnight. I have to get up early to go to work and I have to do the morning exercise walk before that. And between now and then, I've got to get in a few hours with this danged sleep mask that I don't like so much, but I love how much better it makes me feel. I hope this post tonight has satisfied everyone who's been after me to update the blog. If it hasn't, I have some pants I can drop..... :-)
Almost forgot....I guess you're wondering who the "Other Twenty-Eight" are. Well, one night I looked at Ginger and teasingly said in my best please-don't-hate-me-because-I'm-beautiful-voice, "Give us a little kiss." To which she replied, "Just how many of you are in there?" My answer, of course, was "29!" And now you know the other 28.
I have gained two pounds. It started this past Thursday when I went to Frisch’s for lunch. I ate a Big Boy for which I had requested extra tartar sauce. Then I added even more after the server gave it to me. I also dipped each and every french fry—yes, I said FRENCH FRY—in miniature tubs of tartar sauce. I had enough of Frisch’s famous yummy tartar sauce to fill my entire right leg AND the "big one" flopped on my belly just above it.
It gets worse.
Saturday morning I headed back to Frisch’s for their lovely breakfast buffet , and boy-howdy did I belly up to the trough. I filled my plate with a pancake, strawberry jam, a sausage patty, and approximately 15 to 18 slices of bacon. No, unfortunately, I am not exaggerating.
It gets even worse.
I bellied up to the bar one more time. Another pancake, more jam, more sausage, and approximately 20 slices of bacon. Again, I am not exaggerating. Halfway through this demonstration of gluttony, I started feeling sick. I was pretty sure that I was about to gag up the second plate’s food eaten so far. Did I have the sense to stop? Does a bear go potty in the woods? No, I sat there and stuffed every bite left down my throat and looked for more. I was nauseous the rest of the day. My hiatal hernia threatened to sue me for domestic abuse and my colon wouldn’t even look at me, much less speak to me.
Why do I do idiot things like this to myself?
I took a shower earlier this afternoon. As I stood in the bathroom naked as the day as I was born (no, don’t try to picture that, you’ll go blind!), I looked down towards my feet. I don’t say "at my feet" because I couldn’t see my feet. I could barely see the ends of my stubby, little Barney Rubble toes. When I look down, I see my boobs. I see the "shelf." I see the triplets that I’m evidently carrying. That’s it. No hoo-ha, no knees, no ankles, no feet. My legs could fall off and I wouldn’t know it if the only way I could tell was by looking down and seeing them.
Something has to be done. I’m thinking liposuction (eat less!), gastric bypass surgery (exercise more!), wiring my jaw shut (EAT LESS!), and paying Julia Roberts to pretend she’s me (EXERCISE MORE!). These are all good solutions, but I would have to ask my boss for a humongous raise to pay for them, and I just don’t see that happening.
I’ve got it! I’ll eat less and exercise more!
Well, guess what. I've already started doing that. This big binge episode I just went through was me falling off the wagon. Two weeks ago, I started walking through our neighborhood with Ginger every morning before I go to work. I've also stopped visiting the McDonald's drive-thru each morning on my way to work for a bag of hash browns or a cinnamon melt. I'm eating more vegetables and fruit. I’m also getting much more fiber in my diet. My irritable bowels haven’t been this calm and mellow in a long time.
After the breakfast debacle yesterday morning, I spent the day with my dad. When I returned home last night, I was so disgusted and pissed off with myself that I couldn’t stand it. I finally told Ginger what I had done. She gave me a pep talk and told me not to beat up on myself about it. Of course, after she went to bed, I flailed away at myself to the point that I decided that I couldn’t succeed in anything. Not with losing weight, not with wearing the sleep mask, not with writing a book, nothing. I wasn’t going to take my medications anymore. I’m tired of them anyway. I was just going to sit on my fat ass, eat whatever I want, and die whenever Death wanted to fetch me. We all have to die of something, right?
And then I started thinking, slowly but surely, how dumb that would be. Going on a binge was stupid, but sabotaging myself and my health and the work I had done so far would be beyond stupid. It would be fatal to my dignity and my self-esteem, not just my life.
So here I am tonight blogging about every ignorant thing I’ve done this week with food and everything that goes with it. Good for me. I’m not proud of the binge, but I’m happy with myself for all of the things I did correctly before it happened. As I told Ginger, I fell off the bike, but I’m back up on it and starting the ride again.
Be glad that I haven't done any significant posting in a while. Be very glad. I let Dr. OhMyAchyBody talk me into doing Prednisone for 15 days and thought I was going to die. I didn't have hot flashes like that when I went through menopause. OMG! Felt like my flesh was melting right off my bones. And don't even get me started on the diarrhea. When I have to have something to read when I'm sitting on the toilet, you know that I'm going way too often and way too long. Can anyone say "20 minute stretches of pouring like a faucet"? You get the idea.
Someone just shoot me now. The Prednisone was bad enough. What was worse is that being on it didn't prove anything. I had to let go of 2 more tubes of blood. (The total is now 31.) We still don't know what's causing all of my problems. The anemia is still bad, the extra pain is still bad, the SED rate and C-RP are still not right. The SED rate and C-RP levels both decreased by half while I was on the Prednisone, but that's still close to 3 times what they should be. And how many times can I write "still" in one paragraph? Cripes! Dr. OMAB is now thinking that it's something autoimmune and she is consulting again with Dr. Dracula. There are over 100 autoimmune diseases and I already have 2 of them: fibromyalgia and eczema. Woe is me.
I know. It could be a lot worse. I just needed to feel sorry for myself and wallow in it for a little while. I've been pretty good about not whining and complaining. I've done all these doctor appointments and let them suck out blood whenever they wanted. I've got appointments with Dr. OMAB, Dr. Dracula, and Dr. SnoozeAndDoze all coming up next month, and I'm just tired of the whole doggone mess. I'm sick and tired of being sick and tired, and sometimes a person just needs to let it all out. I'm finished now. Thank you for listening. Let's move on to things more fun.
So anyway, after I got that last set of blood test results, I was feeling pretty depressed. That's not so good since I'm only seeing the therapist every 4 months now. But after 15 years of therapy, I know what I need to do to head that nasty depression off at the pass. Fortunately, Ginger and I had planned a fun, long weekend away in Nashville, leaving on the very morning that I dropped by Dr. OMAB's lab to give blood. Wow, did we have a great time!
We left for Tennessee that Thursday morning and checked into our fabulous hotel that afternoon. This is a view of the lobby from the hallway outside of our room on the 19th floor. Isn't that elevator cool?
After we checked in and dropped off our stuff, we headed 10 miles or so south of Nashville to the outdoor Chihuly exhibit at the Cheekwood. We wanted to see the exhibit all lit up at night. Who is Chihuly? Dale Chihuly is just the most amazing glass artist in the world. See for yourself......
Unfortunately, it wasn't to be. The skies opened and a deluge followed. It was a terrible storm. Trees and branches were breaking and falling all over the place. There was spot flooding. The electrical power was lost over part of Nashville and the surrounding area including the Cheekwood. So we turned around, found a wonderful Italian restaurant for dinner, and went back to our hotel. On Friday, all was well weather-wise, so we drove back to the Cheekwood and saw some terrific Chihuly's. That evening, we went to the Grand Ole Opry at the Ryman Auditorium where we saw, among others, Ricky Skaggs, the Grascals, the Whites, and Vince Gill.
On Saturday, we walked back to the Ryman and took a tour of the building including the backstage dressing rooms. It was a great tour. Yours truly hopped up on the stage and belted out a verse of Emmylou Harris's song, "One of These Days". Really. Honest. Here's the proof.
I hope never to do that again in my life. I was so nervous!
On Sunday, we drove back home and had a happy reunion with kitty babies. That break was just what I needed and we enjoyed it so much. We'll have to do another trip soon.
One last picture......When we went back to our room after breakfast on Sunday morning, there was a rainbow outside our window.
It has been two years since my mother died. She left us on Saturday, August 23, around 10:30 in the evening. I was trying to write about my last visit with her and what it meant to me, but I keep having to stop and blow my nose. Silly me, what can I say. I may be 57 years old, but I still want my mommy.
Mom, I love you and miss you, every hour, every day. Always have. Always will.
Mom and Me
These days, it seems like I'm always playing catch-up. Fortunately, I finally got to the point where I can update the blog. I have a lovely schedule this week.
Today - Dr. Dracula at 9:00 AM
Tuesday - Dr. LoveMyPrettySmile (dentist) at 9:00 AM
Wednesday - Dr. SnoozeAndDoze at 1:45 PM
Thursday - Labs at Dr. OhMyAchyBody's office sometime between 9:00 AM and 5:00 PM
Forget the calendar. I can tell you the date according to which doctor I'm seeing. Dr. Dracula reported this morning that my SED rate and CRP level had risen in the last set of labs he did. He took more blood this morning. 29 tubes and counting. Dr. OhMyAchyBody put me on prednisone for 15 days starting 12 days ago. 10mg twice a day for 5 days, then 10mg once a day for 5 days, and then 5mg once a day for 5 days. I'll have more blood drawn at her office on Thursday to see if the prednisone made the SED rate and CRP level go lower. If it does, that will be a big clue that something inflammatory is going on. Also, we'll see if there's any effect on the anemia,which, in the excitement of the SED/CRP and sleep apnea, I had totally forgotten all about (pretty pathetic since that's what we were working on to begin with).
Prednisone sucks. O-M-G. I didn't have the sweats this badly when I was going through Menopause-with-a-capital-M. Even shoving my head into the freezer doesn't help. If it were winter, I could heat this entire house through the Thanksgiving/Christmas season. I could melt snow with just one look. Speaking of melting....I mentally blasted a woman with my inner flamethrower this afternoon at Kroger. The way the store is set up, you can get two carts past each other in the aisle, no more. A gentleman and I were wheeling our carts toward each other in the aisle. A woman came barreling out of an aisle perpendicular to ours. She didn't bother checking the traffic first. Then, when she saw us, she kept right on coming into our path. He hit a display on his right side. I hit a display on my right side. She barged her cart and her fat ass (sorry, but it's true!) through the middle of us and didn't say a word. Of course, being the delicate and shy little flower that I am, I yelled "WELL, EXC-U-U-U-UUUUSE YOU!" in my very best projectve Broadway voice. That was the most people I've ever startled at one time. She didn't bat an eyelash. Didn't have a clue. MORON. As usual, I mean that sincerely. I just don't have the patience for rude people anymore.
So where were we? Oh yeah, the sweats. Again, OMG! Sweat pours down my face so thick and fast that my BIPAP mask ends up on my big left boob instead of my nose. I've never sweat like this in my life, not even at marching band practice at summer band camp in high school with it 100 degrees on the practice field. I can water the plants outside just by standing over them and letting the sweat drip. And don't even get me started on the diarrhea. It got so bad that I took a vacation day from work last week just to stay home and sit on the toilet. Yes. It's been that bad. You don't want me to describe it. Just don't even tempt me. As I said, prednisone sucks. I only have 3 more days of it and then I'm home free. YAY! And I mean that sincerely, too.
What else has been going on? Well, the missus and I (just kidding, sweetie!)....Ginger and I had the pleasure of her 3-year-old granddaughter's company this past weekend. Sophia is 3 going on 30. She's so grown up that it startles you when she acts like a 3-year-old. This kid had me laughing so hard Friday night that I almost wet my pants and drooled, too. She's just so much fun. We hit up the Children's Museum on Friday and had lunch at El Pueblo. The kid loves chips and dips. She was sucking down the salsa and the cheese dip like they were chocolate and sugar cookies. She loves good food, especially cherry tomatos fresh from her grandpa's garden. On Saturday, Sophia, mom, and grandma spent the day at Parky's Farm and Parky's Ark while I visited with my dad. That evening, all of us girls dined in elegance at Germano's in downtown Montgomery. We all got dressed up, including me! Then we walked around for a bit, and Sophia and I played the "Play Me, I'm Yours" piano installed on Montgomery Road a few doors down from the restaurant. Sophia went back home to Tennessee on Sunday. I already missed her before she even hit the end of our street. This is a picture of Sophia ringing up her groceries at the Children's Museum.
Ernie Devald is a volunteer at St. Rose Dominican Hospital. I'm not sure which one. There is one location in Las Vegas and two in Henderson (just outside of Las Vegas). My sister Judy died at St. Rose. Again, I'm not sure which one. But this blog tonight is not about Judy. It's all about Ernie, Debbie, Stacey, and Jeff.
Ernie is one of the 2010 Healthcare Heroes for Southern Nevada, and tonight he is being presented with the Humanitarian of the Year Award for his volunteer work at St. Rose. That's really something to be proud of and I'm certainly proud of him. I met Ernie for the first time at my sister's funeral. He was there because he loved my sister, and also because my sister was his daughter's mother-in-law. Ernie and his wife Debbie are the parents of Stacey. Stacey is married to my nephew Jeff, my sister and husband Bob's son.
I could never do right by Ernie in describing what an incredible human being he is. I can tell you that he volunteers with the pediatric cancer patients. Yeah, the kids. I can't imagine how heartbreaking that could be. But I can imagine how uplifting it is because Ernie says so. He talks about his work (and others talk about him) here Words That Heal for St. Rose Pediatrics and here Las Vegas Sun - Ernie Devald. You really must read the articles. This is one amazing man.
If you've read Ernie's story, you know how compassionate he is and how much he loves the kids. He loves them so much that he even had his head shaved in solidarity and to honor the kids and their struggles.
This is a man who is always there for others even as he fights cancer himself. The old adage says "Behind every man is a good woman", and it's so true in this case. Ernie can do what he does not only because he is kind and loving, but also because he has the support and love of his wife Debbie. Debbie, too, has spent her life in helping others as Executive Director for Juvenile Diabetes and American Diabetes for over 20 years. While doing her own important work and volunteering, Debbie has been behind--no, make that "beside"--Ernie to help him in whatever capacity he needed so that he could continue to do the work that makes him so happy. But it doesn't stop there. She also works with her daughter, Stacey. Volunteering and philanthropy is a family tradition.
Stacey, my niece-in-law, is the founder and principal of "Professionals in Philanthropy, LLC". The mission of her firm is "To help donors and nonprofits become the catalyst for change through strategic, effective and thoughtful planning and action". That's the professional way of saying that they help people with lots of money and non-profits make the best use of their time and resources, and they do a lot of other things that I won't venture to put into words because I'm sure I would get it wrong. This company is a really big deal and you can read more about it at Professionals in Philanthropy, LLC. Stacey has been married to my nephew Jeff for about 9 years now. They fit together like a hand in glove. Jeff is a big ol' teddy bear, sweetheart of a guy who you just want to hug every time you see him. He and Stacey do everything they can to support and help Ernie and Debbie as they go on this cancer journey. I came across this exchange between Debbie and Stacey:
Debbie: Celebrating the holidays with family and friends. A two night stay at the M Resort was heavenly. Stacey & Jeff spoiled us with a fabulous dinner at Terzetto's Steak and Seafood Restaurant.....delicious!
Stacey: We enjoy spoiling you guys! We're all so fortunate to have each other and that we had another wonderful Christmas.
Isn't that what life is all about? Having one more dinner, one more Christmas, just one more day in the life with the people you love and who love you. You really can't ask for more than that.
Ernie is receiving his award tonight. I'm so happy that he is feeling well enough to be there. It's always good when the nice guy wins and when his family is there to be part of it. Congratulations, Ernie. Here's to you! And here's to those who love you.
(Many thanks to Debbie and Stacey for the pictures, etc., especially since I grabbed them without asking first!)
I picked up the BIPAP stuff and tried it for the first time last Thursday night. Here are a couple of views of the machine.
As you can tell from the sticker, there is a tub that I fill with distilled water. The water keeps some humidity in the air that gets blown into my nose so that the nose tissues and airways don't become all dried out and sore. One end of the hose hooks on to the tub cover. The other end of the hose hooks on to the mask.
Doesn't that look like fun? I kept wondering how in the world I would ever be able to sleep with that thing on my face and pressurized air shoving into my nose. Well, I found out how. Very nicely. Best night of sleep I've had in a very long time. I couldn't believe it. The morning after the first night of using the machine, I woke up alert. I wasn't yawning. I wasn't foggy brained. I didn't feel like I needed to sleep another 6 hours. It was amazing. I'm calling it a miracle.
When I told my Dad what I would have to do and showed him what I would have to deal with, he said, "You can get used to anything." As always, he was right. I can get used to sleeping and waking up like normal people. It's a wonderful feeling.
When I turn 57 on my birthday tomorrow, I will be the same age that my sister Judy was when she died in 2007. It's a sobering thought and it feels weird in a what-am-I-doing-with-my-life kind of way.
Her death certificate gives the same cause of death that most certificates do. She stopped breathing. What killed her was the myelodysplastic syndrome and the hepatitis C. She died not too long after being removed from the national donor list for a liver (she had heart issues from rheumatic fever), and her liver stopped filtering the ammonia from her body. It failed, and she was dead a short while after she was removed from life support. My brother-in-law, niece, and nephew didn't make her endure the respirator any longer than necessary, and that's one of the many reasons that I will love them with all my heart until the day I die.
When my sister Lisa and I flew out to Nevada for Judy's funeral, I expected to see her lying in a coffin. I didn't expect how she looked. The only way I could recognize her was to stand at the back of the room and look at her profile. Then she was the sister I loved. When I walked up to the coffin and stared down at her, her face was so swollen and round that she didn't look like herself at all to me. "God, Judy, you look like hell," fell out of my mouth and I left the room in tears.
I walked around outside. Besides the funeral home, there was a cemetery and mausoleum. I sat in the cemetery on one of the benches and cried. Then I walked around looking at headstones and cried. I called Ginger back home and cried. I went back inside just before the funeral started and then I listened. I listened as one person after another told about how Judy had taught them about life and about living. I heard how Judy was so kind and caring and compassionate. How she took care of her friends as if they were family. What an inspiration and role model she was.
Judy wasn't the easiest person to have for a sister while we were growing up. She had a horrible temper that had to be seen to be believed. One time, when our new baby sister had been admitted to the hospital with possible meningitis, I said to Judy, "It's all right, Lisa will be okay." Judy's response to that was to explode on me. She grabbed a big butcher knife from the kitchen counter, chased me through the house and out the door. Fortunately, I could run much faster than she could. Having been the brunt of her temper many times, I had no doubt that she would have plunged that knife right through my heart if she had caught me.
Another time, I was getting ready to go to my summer job one day right after I graduated high school. I was working part time as a teacher's assistant at a grade school across town. I was dressed and ready to leave (I walked the 4 miles to work) when Judy demanded that I take off my panty hose (the only pair I had) and give them to her. She had been dressing for work, too, and had snagged a run in her last pair. I told her no, that she could stop somewhere on the way to work and get a new pair, and I left for work. Mom told me later that evening the she had awakened to the sound of Judy pulling my drawers out of the dresser and throwing them and their contents against the wall. Then she grabbed her car keys and said she was going to run me down and kill me. Mom must have believed her because she told Judy that if she left the house in the next hour, she would call the police and have her arrested. When I came home later that afternoon, Judy was friendly as ever and acted as if nothing had happened. She could be kind of psycho that way.
I remember calling my sister one Christmas Day and my niece answered the phone. She calmly informed me that her mother had just tossed the vacuum sweeper across the room. Something about the Christmas cookies not being baked. Marriage hadn't changed her temper, it seemed, after all. But I think being sick did. I think being sick changed a lot of things.
We had known since Judy had contracted the rheumatic fever in 4th grade that she probably would not live to a ripe old age. When her first child was born, her heart acted up so much that the doctors had to take the baby a few weeks early. But none of us dreamed of what was to come. She contracted hepatitis C from tainted blood. Then the MDS hit. A double whammy. She knew that one or both would end up killing her. And then she told the doctors that she wasn't dying until she was good and ready. It took her 10 more years before she was ready.
Judy fought for life, tooth and nail. All of we siblings were typed/match for a possible bone marrow transplant. Lisa won that contest. (Yes, Judy actually turned it into a competition.) She and Judy traveled to Seattle to the Fred Huchinson Cancer Clinic to get a preview of the procedures and processes. Judy was put on the donor list for a liver. And then she lived her life to the fullest. She had places to go, things to do, people to see. She did it all. She knew all too well how precious life was, every moment, and she tried to show us in so many ways. It wasn't unusual for her to send us an e-mail telling us that we had the best family, that we all take care of each other, that she loved us very much. Back home, she was teaching her family and friends there the same thing.
Judy has been on my mind a lot this week in the days leading up to my birthday. Tomorrow, I will be her age, and I wonder who I have encouraged. Who have I taught about life and living. Who have I been a role model for. What have I done with my life. Have I ever inspired anyone. And then I look at being 57 and I think that I don't have much time left. I may live to be 80, but I may die next week, who knows. Why do I live like I'm dying? Isn't it time to live like I'm living? If not now, when? If I knew I only had one week to live, what would I do with that time? What would be so important that I had to get it done before I die?
When I figure it all out, I'll let you know. In the meantime, Happy Birthday to me. I miss you, Judy.
Ginger returned home from Bahrain on July 4th. Everyone had a wonderful time. The team even had a swimmer who made it to the finals. But the International Children's Games aren't really so much about competition. The Games were started by a gentleman (more like a "gentle" man) over 40 years ago who wanted to promote peace and friendship through sports. The participants are children ages 12-15 from around the world. These kids learn to communicate with, listen to, and understand each other. They learn that differences aren't so frightening, that peace and friendship across national, racial, gender, and so many other lines are much more important than letting those differences foster hate and prejudice. I have faith that these children will not grow up to start or join groups like "THIS IS AMERICA...I SHOULDN'T HAVE TO PRESS 1 FOR ENGLISH."
"THIS IS AMERICA..." is a group on Facebook. This group has every right to exist and I support its right to exist. Freedom of speech is very important to me. Without it, I couldn't write this blog. But this group makes me sad. It makes me wonder how we Americans have become so haughty, so arrogant, that we think our country and our world exist just for us.
There's no doubt in my mind that this group is aimed at the immigrants living in our country, legal or otherwise, and specifically those of Hispanic descent. When I phone in my prescription refills, I'm advised that I can press "9" if I need to converse in Spanish. That doesn't bother me a bit. It takes about 2 seconds for me to listen to that little message. For me, it's just a blip. But for someone who only speaks Spanish and needs medication, it's a lifeline. When Ginger and I were in Italy last October, we went to an outdoor restaurant on the plaza in Florence to have dinner. I opened the menu and my chin just about hit the table. The menu was written in Italian. Turn the page and the menu was written in English. Turn the next page and the menu was written in German, and then in Japanese, and then in Spanish. You get the idea. The menu was written in 9 different languages. Signs around the city were posted in Italian and English, and oftentimes other languages. Store employees could converse in lots of languages. One morning, we had breakfast with a little girl and her mother. The little girl (maybe 7 or 8) was learning English in school. She could already speak Italian, German, and another language (I can't remember which one).
European cities, Asian and Middle Eastern cities, many countries do everything they can to make a visitor's stay memorable and easy, especially for those of us who only speak English. Would it hurt us so much if we did the same and returned the favor? "HEY! IF YOU'RE GOING TO LIVE HERE, LEARN THE LANGUAGE!" That comes out of the mouths of so many smug American faces. English is one of the hardest languages in the world to learn. Can't we give people a little time? Can't we give people however long it takes?
This group makes my heart hurt. As Anne Lamott so accurately wrote, it makes me "want to drink gin straight out of the cat dish." She's also the one who wrote, "You can safely assume you've created God in your own image when it turns out that God hates all the same people you do." I don't believe that God hates the immigrants in America, not even the illegal ones. I do believe that "THIS IS AMERICA..." has created God in ITS own image. I hope no one I know or love buys into this group.
Please press "1" for peace, love, and understanding. Let there be peace on Earth. And let it begin with me.
Aren't we just thrilled to be here? Yes, we are! I don't know about you, but I could be back at Dr. SnoozeAndDoze's place wired up like a motherboard on speed. See Exhibits A and B below:
I think these photos came out pretty good, considering that I was shooting into the mirror. Besides all the stuff you can see on my head, face, and neck, I was also hooked up across my collarbone, and there were wires under my shirt and through my pants' legs hooked up to both shins. I couldn't get a picture of me in the mask because once the thing hanging around my neck was hooked in to the wall socket, I couldn't drift more than a foot or so from the bed. Rest assured that there will be more pictures once I get my machine and mask.
No, I haven't received the machine and mask yet. It turns out that I need a bi-level unit and that one had to be ordered. I should get it sometime this week. Why, you ask, do I need a bi-level unit? Good question! Thanks for asking! Because I'm a delicate little flower, that's why. (Hey! I heard that snort! Let me remind you that I know where you live and I'm crazy.) I can't exhale very well while there's a bunch of pressurized air being forced into my nose. I don't breathe hard enough to push the air out through the incoming rush. So I'll be using a machine that blows the air into my airways at the needed pressure, but then backs off when I exhale so that I can get the air back out. Cool, huh?
I keep saying "mask" because the comparatively tiny things I posted a picture of in a previous post is not what I will have. After trying both kinds, it ended up that I can tolerate the mask on my face much better than the things going into my nose. And, again, it was easier to exhale without things in my nose. The mask covers my whole nose and has straps over the top of my head and around my face.
I still don't know how anyone can be expected to sleep during a sleep study. You've seen how I was wired and you've got a good idea of how the mask works and is strapped on. I slept about 3 hours. As my friend Carolyn pointed out, "Isn't the mask supposed to help you sleep better?" Yes, and it will. But there's that adjustment period. I have to get used to having that thing on my face, and that thing has to get used to me. It's kind of a package deal. Don't ask me what that means. That's what I was told.
So I'm waiting for the equipment and then we can start the honeymoon. I'm also waiting for those lab results from Dr. OhMyAchyBody. It's always about the anticipation. Shoot, just when I thought I'd be witty and put the old Heinz Ketchup commercial video here (the one with Carly Simon's song "Anticipation", remember?), I find it's been removed from YouTube because of terms of use violation. Curses, foiled again!
Better quit while I'm ahead.
Forget about the massive cleaning. I'll be lucky to finish the bathroom. Which is where I'm spending most of my time today and not just to clean, unfortunately! Everybody ready......TOO MUCH INFORMATION! :-)
28 tubes of blood and 2 cups of pee. Today's contribution was 4 tubes and 1 cup. Surely, we can finally get a diagnosis this time. (Okay, all together now...."don't call me Shirley!")
Got an e-mail from Ginger. One of the swimmers made it to the finals. I don't know anything more yet. Ginger met the Crown Prince of Bahrain and got his picture. All kinds of fun stuff. I'm just ready for her to be home. A week is long enough. She arrives at the Dayton Airport on Sunday afternoon, just in time to get home, have dinner, and sit out in the front yard to watch the mega-fireworks. It will be a good day.
We almost had a disaster here at home yesterday. I saw Snowflake (the albino squirrel) and other critters in the backyard rummaging for peanuts, so I opened the door to go outside and oblige them. The two furry princesses (Thelma and Louise, the wonder kitties) were right there ready to run out on the patio. Snowflake sees me and also comes running down the hill onto the patio to get her peanutty goodness. Louise sees Snowflake. Snowflake sees Louise.......and the chase is on! They both take off like bats out of hell. I'm yelling at Louise to stop. Snowflake is half way up a big bush and looking at me like I'm Salome and she's about to be the head of John the Baptist while Louise is poised at the bottom of the bush. So I go get Louise. Being the good kitty that she is, she comes right back over to the patio. I go up to the top of the hill and start tossing the peanuts around. Louise stays put. Snowflake climbs down the bush and comes up to the top of the hill. All is well. Whew! Never a dull moment around here.
So I guess you all are probably getting tired of all this "day in the life" stuff. Nothing witty or life changing. No diet news. No book talk. Which reminds me.....someone who shall remain nameless (PEGGY! PEGGY! PEGGY!) wrote to me yesterday, "aren't you supposed to be writing?" Well, hey, I've been doing a lot of word pushing this week for work. And I've blogged a lot this week, which is more than I can say for someone who shall remain nameless (PEGGY! PEGGY! PEGGY!). :-) (Time out for a commercial. If you want to read Peggy's blog, it's here on Blogger/Blogspot/Whatever and it's called "To Ponder, To Chortle, To Weep". And it's good.)
Seriously, there will be some talk here about the diet and the book soon. I can tell you that I haven't lost any weight and I haven't written a word of the book. I can also give you 10 or 20 excuses, none of them worthwhile. I've been doing a lot of thinking this week, some contemplation, a little self-examination. Ever since I turned 30, I try to have at least one mid-life crisis per decade, and I think I'm having the crisis for my 50's now. Nothing like being in a good blue funk to make you clear out the cobwebs and figure out what's important. So I'm a little busy right now clearing and figuring. I'll write more about that later.
In the meantime, I'm going to Joey and Tommy's graduation party on Friday night and then fetching Ginger from the airport on Sunday. I'll be doing some mass cleaning of the house and some outside work on Saturday so the place looks fabulous when Ginger walks through the door. So it will probably be just a few days before I'm blogging again, unless I hear from Dr. OhMyAchyBody about the labs I did today.
Everyone have a fun and safe holiday. Happy 4th of July!
And maybe more. I got a call today from Kathy at the office of Dr. OhMyAchyBody. I will be reporting to their lab tomorrow at 1:30 PM to part with more blood and pee in their cup. (Better their cup than mine!) I can't tell you how much I'm looking forward to that. Not. The next tube of blood will be number 25. I wonder if I get a free microwave or something when I hit number 100.
I had the weirdest thought today. (My random thought generator has been in overdrive all day.) I was officially diagnosed with fibromyalgia in 1995, and so I have now officially had 5,475 consecutive days of pain (not counting leap year days or all the months I had the pain before I finally got a diagnosis). If I live to be 80, there will be at least 8,395 more days of pain. Not that I'm complaining. Excedrin is good to me. :-) It's just that I find those numbers mind boggling. It doesn't take much to entertain me.
Today in Bahrain, the temperature was up to 103 degrees. Yuck! Out in Vegas and near Phoenix where I have family and friends, it's not unusual for the temp to hit 112 or 115. My sister always said, "But it's a dry heat, it's not so bad." Baloney! That's freaking hot! You can fry eggs and burn toast on the sidewalk in that kind of heat. Anyway, I haven't heard from Ginger yet about how the International Children's Games are going, but I have had a couple of e-mails from her. She said that her hotel is fabulous and the food is magnificent. I can't wait to see all the pictures she's taking.
So yesterday I was in my usual stall in the ladies' room at work. No one in the bathroom but me, myself, and I. Another woman comes in and sits down in the stall right next to me. I swiftly move my feet over so she can't recognize me by my shoes. Pretty smooth, huh? But I recognize her shoes. It's the same woman who brushes her teeth in there every afternoon. Now I ask you: would you brush your teeth in a public restroom? I've read that when a toilet is flushed, bacteria and microscopic poopy flecks come barreling out of the bowl at 600 miles per hour. Even with the stall door closed, you know that potty sludge has to fly right over and under the door and straight to her toothbrush. EWWWW! I'm all for good dental hygiene, but that's too much for me. I'd rather just chew sugar-free gum after lunch and brush when I get back home.
I was thinking today about all the idiots who are screaming for everyone to boycott BP. Do they really think that by not getting gas at a BP station, they can have a huge effect on BP's bottom line? That's nothing. Not even a drop in BP's profits. The only finances they're affecting are the poor people who actually own the stations. Why would anyone want to make a hard working, barely getting by, station owner lose his or her business? That's just mean. I'm as pissed off as anyone else about what this oil mess is doing to our coastline and the life it sustains (animal, fish, and human), but let's not penalize some station owner who has absolutely nothing to do with the problem.
I did it. I got back on Facebook. I'm keeping my friends to just relatives, girlfriends and boyfriends of relatives, and a couple of friends from way back when. So far, the "Let's Kill All the Gays" and "If You're Pro-Choice, then You Must Be Pro-Abortion, So Let's Kill You, Too" folks haven't found me. (Just for the record: I don't condemn anyone who has an abortion. Sometimes it really is necessary. I wouldn't have one myself, though, because I believe that life begins at the moment of conception. I also wouldn't have an abortion because that's my CHOICE.) Anyhow, so far, so good, and I hope it stays that way because I really like keeping up with my nieces and nephews on FB.
My cat just walked across my keyboard and past my face, and she left me a cloud of kitty fart. I really have to go now.
I was going to post a new blog tonight, but I used up all my time playing with the fish at the bottom of the screen. :-)
You know it! We're talking a pound of bacon and sausage for breakfast, whatever I want for lunch, cereal and popcorn for dinner. And the best part? I can run around the house in my pajama top and underwear the whole time. Why? Because these are the kinds of things I do when Ginger leaves the country.
Yep, my better half is traveling to the other side of the world. I drop her off at the airport tomorrow. She heads to Virginia to hook up with her traveling companions; hops a plane the next day to London by way of Minneapolis; from London to Qatar; and, then from Qatar to Al Manama, Bahrain. "Bah-what", you ask? Bahrain, an island country in the Persian Gulf, east of Saudi Arabia. How come? Because she's way cool, that's why. Also because she is traveling with Team Chesterfield from Virginia. This team will be participating in the International Childrens' Games which are being held this year in Bahrain. Her daughter has been taking Team Chesterfield to these games for several years now and is doing it again this year. The three grandchildren (one in college, two in high school, all former participants) are making the trip, too. What a great family thing to do together.
Better her than me.
I am such a homebody that I miss Ginger and the cats when I'm at work. We're talking seven miles away from our house. It's not like I've left the country. I just love being at home. I did venture to Italy last October and had a fabulous time. But I like my home and the family I live with in it. I like sleeping in my own bed. I like trips where I'm away for only 2 or 3 nights and I can drive back home in an hour. I'm not much of an adventurer in travel. I miss home too much.
Ginger, on the other hand, retired a few years early just so she could travel. This woman has the good energy and health of someone half her age. She's been all around the world and still going. I love that she doesn't mind traveling without me and I think she loves that I don't mind her doing it. I hang out at home, take care of the kitties, fetch the mail and newspaper, whatever needs to be done. She doesn't worry about anything at home and I don't worry about having to try to pee in a small trench dug across the floor. (Don't ask. You don't want to know.) But as I was saying, she's okay for me to stay. And I'm okay for her to go, because.....
I can sit around the house in my pajama top and underwear! No pants! There's just something wickedly fun about that. I can head to Frisch's for breakfast and eat my way down the breakfast bar (with an extra plate for all the bacon and sausage, of course). If I don't feel like cooking dinner, I can just toss a bag of popcorn into the microwave and there's my meal. I can stay up all night on the weekend and watch movies without worrying that I'm being loud and keeping her awake. Actually, I can do that now. But it feels like I'm getting away with something naughty if I do it when she's not here!
So here's to Bahrain. Here's to Team Chesterfield. Here's to Ginger and everyone traveling with the team. Have fun! Safe passage! Tomorrow afternoon I'll be sucking down nachos and cheese at the movies followed by M&M's for dessert. It's so good to be me!
I can be a little a bashful in the "public restroom" department. I'm much better at it now than, say, even 3 short years ago. But there is still an occasional episode when my kidneys say "hell, no, we won't go" and the number 2 zone won't do a "number" or a "2". So I know already that I have potty issues and I'm okay with that. But there are a few things that just totally creep me out and they should creep you out, too.
The first one is that I absolutely cringe when I go into a public restroom stall, drop my drawers, sit down, and the seat is warm. I just can't stand sitting on someone else's butt heat. If the seat is cold, I can pretend that no one has ever sat on it before me. But if it's warm...well, I don't know where that butt's been. I know that's weird, but there it is.
It gets weirder.
The ladies' restroom by my office has either 7 or 8 stalls in it. Almost every time I'm in there by myself, whistlin' a tune and doin' my business, someone else comes in and sits down in the stall right next to mine. Why, when there are 6 or 7 other empty stalls, do you (and you know who you are) have to sit right next to me? That's just creepy. If you really gotta go, by all means come on in and sit for a spell. But when I'm on the throne and it's just you and me and all that empty real estate, don't sit next door. That ain't right. I'm sure there must be a law against that somewhere.
If, when washing your hands, you get water all over the counter, please dry it off. I'm short, okay? And I'm tired of dragging my belly...I mean, shirt...in it. And stop shaking the water off your hands and flinging it on the floor. Were you born in a barn? That's why God makes paper towels.
Finally, wash your hands. Yes, you. And you. I know who you are. You never wash your hands after you've wiped and flushed, and it's really grossing me out. STOP IT!!!
Whew! I feel so much better now!
No, I'm not. This is me wearing the torture contraption that I will be sleeping with every night after the next time I stay over at the sleep lab on July 7th. Probably not a moment too soon because you can tell by the bags under my eyes that I didn't sleep well last night.
And this is what the thing looks like when it's not on my head. This is the kind for people like me who are too claustrophobic to have the mask that covers the nose completely.
I have no clue how I'm going to sleep with this on me. When I would open my mouth to speak while the air was pushing through, I would feel like I was suffocating. When I exhaled through my nose, it was like breathing into a really thick bath towel. It's not easy pushing air out your nose while some machine is forcing air into your nose. I'm going to whine about this a lot. I'll just warn you now.
On a brighter note, I''ve been assured that I will get used to it, and that my quality of life will improve immensely. Yeah, right, I can't wait to see how that works out for me. But I'm determined that it WILL work out. I have no other choice. Sleep apnea is nothing to mess around with, plus I'm so tired of being so tired. I'll get the hang of this thing, one way or another. I'm thinking Ambien. Lots of Ambien. And Cheetos! :-)
Obstructive Sleep Apnea! Not just OSA, but severe OSA. There's that "flippin' overachiever" streak coming out again. It seems that I stop breathing for at least 10 seconds over 100 times an hour. The average episode of apnea (a Greek word that literally means "without breath") lasts 17 seconds. The longest episode recorded for me was 33 seconds. Well, for pete's sake, no wonder I'm so tired all of the time. First I've got the fibromyalgia zapping all my energy and now OSA on top of that. I have a narrow airway and it collapses when I'm sleeping. Can't I just have something normal like simple insomnia and fix it with a pill? Okay, Debby, no whining! :-)
The night that I did the sleep study, I had no stage 3 or stage 4 (REM) sleep at all. I'm surprised I'm on my feet, much less actually functioning at home and on the job.
So I go back to see one of the technicians on Friday. We're going to take an hour or so to let me check out the CPAP mask, try wearing it (I've got this thing about devices on my face, especially covering my nose), see if I can handle having air blasted up my nostrils to keep the airway open....you know....all the fun things a gal likes to do when she has a day off from work. I had already planned to be seeing a movie on Friday afternoon, but now I'll be panicking at the sleep lab instead. The next night that I'll actually sleep there is July 7th. That's when I'll try to sleep for the first time with the mask on and if I can, the tech will spend the night adjusting the air pressure and personalizing other controls just for me. Because I'm spatial.....I mean special! Then I get to bring it all home with me and try it out for a month, after which I go back to see Dr. SnoozeAndDoze on August 11th to consult on how I'm doing after a month with the mask and machine. I'm predicting that by then I will have clawed all the flesh off my face after ripping that thing off every night in my sleep and I'll be a raving, sleepless lunatic, haha.
Let me present you with a little something about OSA for your reading pleasure:
"Obstructive sleep apnea is a very important diagnosis for physicians to consider because of its strong association with and potential cause of the most debilitating medical conditions, including hypertension, cardiovascular disease, coronary artery disease, insulin-resistance diabetes, depression, and sleepiness-related accidents. Over time, untreated obstructive sleep apnea may hasten death through heart disease, hypertension, stroke, myocardial infarction, heart failure, cardiac arrhythmia, diabetes, metabolic syndrome, or vehicular or other accident due to sleepiness or other behavioral affects noted."
As Cheech and Chong used to say about some of their marijuana...."That's some serious sh#t." But that's why we do the sleep study and start using the CPAP mask whether we like it or not. It keeps all that bad stuff from happening, and we live long enough to play with the nieces' and nephews' children. :-)
I'm going to scroll down to the bottom of the screen now and play with the fish. Nighty-night, sleep tight!
So I did this sleep study a week ago today. It was at Dr. SnoozeAndDoze's office building. I arrived there and was given papers to fill out about how I was feeling on the sleepiness/tiredness scale, when I last had caffeine, when my last meal was, and so on. Then I got into my jammies and waited for George the technician to come back to do the first of two sessions of hookups to wires. But I'm getting ahead of myself.
The room was very nice. There were at least four private rooms. Mine had a double bed, TV, desk and chair, and a very nice bathroom to go with the very nice room. When I first saw the bed, the bedspread looked to me like a high-priced Persian rug which gave the room a particular atmosphere, and of course I said, "It looks like a bordello in here!" Nothing like embarrassing myself right off the bat. What does that mean anyway....."right off the bat". I know it means "immediately", but how did the saying get started? Probably from baseball. DUH. I'll have to Yahoo that. Hang on a second.....Here it is, straight off the Online Etymology Dictionary web site:
"right off the bat is 1914, earlier hot from the bat (1888), probably a baseball metaphor"
Well, I'm so glad I looked that up. Another DUH. Excuse me for a moment while I go roll my eyes.
Okay, so I was at the bordello, I mean sleep lab, and George hooked up all these electrode thingys to my head, face, across just below my collarbone, and on my legs. They're all wired together and the ends meet in this---I don't know what to call it---a giant plug kind of thing. This goop he glommed on my hair to help the thingys stick to my scalp was just gross but, fortunately, water soluble. Big globs of what looked and felt like Silly Putty, only stiffer, thicker, and sticky. By the time he finished, I looked like the Bride of Frankenstein waiting for Igor to meet her for a little thrill in the graveyard, you know? Then he draped the big plug whatever and wires across my shoulders and said he would be back at bedtime for the second round of wiring.
In the meantime, I read the newspaper, worked the puzzles, had a little snack, and took my nighttime meds. George dropped back by and connected me to the other big plug end and ports/whatever coming from the wall. He also put two stretchy cloth bands about 2 inches wide across my chest and middle. I don't know what those were for. Then he took this torture device (a rubber tube with two prongs to put into my nose and an upside down prong to go in front of my mouth) and put that on my face and over my ears. That was to measure my breathing. I don't take kindly to having anything near or on my face like that. When I've been in the hospital and had to have oxygen through the little prongs in the nose....well, it didn't happen. I always sat them on that dented space between my nose and upper lip and hoped for the best. What's that space called? Shoot, now I need to Yahoo that. Hold on....it's called the philtrum. (You can't say that this blog is not educational!) But since the major point of the sleep study was to see if I stop breathing when I sleep, I sucked it up and endured the miserable thing.
I don't know how they can expect anyone to sleep with all this crap on. George said I slept more than I thought I did, but you couldn't prove it by me. Fortunately, I did sleep enough that all the important data was collected and enough of it was collected to come to a diagnosis. I find out the official result when I see Dr.SnoozeAndDoze tomorrow afternoon (George was legally not permitted to tell me), but I already have a pretty good suspicion of what it is. Why? Because before I left the next morning, I had to sign a paper that said I was aware that I had demonstrated all the symptoms consistent with a diagnosis of Obstructed Sleep Apnea and I understood that I should not drive or operate heavy machinery if I'm sleepy or tired.
So if OSA is the official diagnosis, then I'll have to use a CPAP machine or a mouth splint or something to keep the air passages open. I don't see how I can possibly sleep with a mask on my face and air being blown through my breathing passages. But a lot of people do it, so I guess I can, too, if it comes to that.
And Then We Meet Dr. OhMyAchyBody
George came in at 6:00 AM the next morning to unhook all the wires, electrodes, elves, and ladybugs from me. Then I had a shower to get all the Silly Putty glop out of my hair. The bathroom was gorgeous. Nice shower. All these miniature bars of soap and little bottles of shampoo/conditioner, soft and thick bath towels. Very posh. Then I filled out the remaining papers and headed home. Then my better half and I went across the road to Bob Evans for breakfast. Hey now....I deserved bacon after the night I had! After that, I dropped her off at home and headed to the office.
When I got to work, there were two voice mail messages for me. At this point, I had not yet been contacted by anyone from Dr. OhMyAchyBody's office. Now I had two messages! One had come about half an hour after I had left work the day before and the other had come about half an hour before I got to work that morning. It turned out that there was a cancellation and could I come see Dr. OhMyAchyBody at 11:30 that same morning? And could they e-mail a whole bunch of papers and forms to fill out and bring with me to the appointment? "Sure," says I, "I really don't want to work this morning anyway." I knew it would take a long while to fill out everything and I was right.
So I went to Norwood where the office is located. Dr. OhMyAchyBody whacked me all over my body with yet another torture device. Yep, it's official, I have a lot of pain. Well, no sh#t, Sherlock! She was amazed at my high SED rate. She also wanted to know if I have dry mouth and/or dry eyes. No, I don't, and why was she asking. Because those are the two primary symptoms of Sjogren's Syndrome, and she's thinking that I may have that because I have the third biggie symptom----are you ready for this?----chipmunk face. Excuse me, I have what? Chipmunk face! CHIPMUNK FACE!!! I just thought I had cute puffy cheeks. Nooooo. I have freaking CHIPMUNK FACE!!! In professional lingo, chipmunk face means that my parotid glands are swollen. The parotid glands are the salivary glands beneath each ear. Sjogren's Syndrome is:
"....a chronic autoimmune disorder in which the body's immune defenses attack the salivary glands, the lacrimal glands (glands that produce tears), and occasionally the skin's sweat and oil glands. In some cases, the illness also affects the lungs, liver, vagina, pancreas, kidneys and brain. Most people with this disease are women who first develop symptoms during middle age. In about 50 percent of cases, the illness occurs together with rheumatoid arthritis, systemic lupus erythematosus (lupus), scleroderma or polymyositis."
Dr. OhMyAchyBody has ruled out polymyositis and Dr. Dracula had already ruled out lupus. I looked up the symptoms for scleroderma and I'm pretty sure that's a definite "no", too. It wasn't even mentioned in passing. And let me stress, as the good doctor said, this is not a diagnosis, it is just a musing, a weak guess at this point. Sjogren's is not the only thing that can cause the parotid glands to swell. I signed all the forms so that she could get my records from Dr. Dracula and Dr. Evil to see all the tests that have been done so far and their results. Then she can determine if she needs to have any other tests done or if she can make a diagnosis from the tests I've already had.
Now you're all caught up and know as much about my condition as I do. And I bet you've already looked in the mirror to see if you have CHIPMUNK FACE!!! :-)
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