Monday, July 18, 2011

Just some thoughts before my birthday

I have a blog in process about our trip to New York, but I don't feel like working on that tonight.  Tomorrow, July 19, is my birthday.  I'll be 58 years old - a year older than my sister was when she died in 2007.  It's a strange feeling to be the oldest now.  I feel like an imposter.  Like a little girl wearing her mother's big shoes.  Oldest.  The title doesn't fit me.  It really still belongs to her.

I've been thinking about Judy and Mom a lot lately.  Ginger and I saw the movie "Beginners" today.  A man's father has died, so the son now has the father's dog.  At one point, the son looks at the dog and says, "You miss him, don't you?  So do I."  It was all I could do not to bust out crying.  I miss them both so much.  I have a scar on my heart just like Harry Potter has a scar on his forehead.  There are times when it hurts and nothing can ease the pain.  I just have to feel it and acknowledge it, and let it work its way through.

I thought by now that I would know my place in this world.  I thought I would have written a few best sellers, composed a world-renowned symphony.  I thought I would be making the planet a better place to live or just give someone a better foothold in life.  I'm sitting here now thinking that I haven't done crap.  Of course, I know that's not true, but some days I feel the thought hanging over me like the moss on the trees in old New Orleans.  It's like a burial shroud that I can't quite figure out how to take off.

This blog is over a year old now.  I set out for it to be a place where I could hold myself accountable to lose weight and to write a book, neither of which has happened.  I've been thinking about shutting the blog down.  But if Judy were here, she would smack me e up the side of my head and tell me to snap out of it.  She'd say that despite the depression and the biopsies and the constant medical tests, my life is pretty darn good.  And she would be right.

So.....

REAL SIMPLE magazine is having an essay competition, the "Fourth Annual Life Lessons Essay Contest".  I hold no hope of winning it, but I'm "saying" out loud in public here on this blog that I'm entering the contest.  The essay is supposed to answer the question, "When did you first understand the meaning of love?"  The word limit is 1500 words.  I think I can do at least a 1000.  Submissions have to be in by September 15.

Happy Birthday to me.  If I don't start becoming the person I want to be now, then when can I?  I learned with Judy and Mom that you never know when it's over, even when you've been fighting for years to stay alive. 

If not now, when?

Wish me luck.  I'll get that blog about our trip on here by the end of this week.

Tuesday, May 24, 2011

The heads are back!!!

I'm so excited not only to just see the heads, but there's also a new one!  Thanks, Sara!  I still can't see the heads on my laptop, but when I checked from my desktop from work, they were right there!  So something screwy must be going on with my computer.

Here's the first blog that I wrote for tonight:

Well, it's the same old story. A bunch of tests, a bunch of negatives. No diagnosis, no nothin'.  If it weren't for the fact that the tests have also been ruling out a whole lot of bad stuff, I'd be so depressed that I'd gouge my eyes out with a fork.  Yes, folks, it's THAT disappointing.

They compared last week's MRI and MRA of my brain with ones done in 2008. The left middle cerebral artery is slightly irregular. That can indicate anything from a major stroke to tiny TIAs. Having a few tiny TIAs and not realizing it would be no surprise. However, the emphasis is on the word "slightly". So slight that it's not going to be a even a blip on my worry list.

There were also some white matter changes. This can indicate things like Multiple Sclerosis, Huntington's disease, ALS, Parkinson's' disease, and my personal favorite, Alzheimer's disease. But 9.999999999999999 times out of 10 in someone my age, they're just age related changes. They're not on the worry list either.

The bone scan was good. At least that's in my favor. I am living proof that taking Vitamin D and Calcium supplements really help because I get very little Calcium in my diet. I don't drink milk. I don't like yogurt and cottage cheese and things of that nature. So take those supplements, ladies!

Anywho, Dr. OhMyAchyBody is going to confer with Dr. YesIAmTheClevelandClinic to decide whether I should now have my parotid glands biopsied. I also start on the Topamax tonight to see if it will help the pain without messing me up some other way.  There's also the TB test this afternoon, which I have no doubt will also come back negative.

In the meantime, I will be holed up in my room tonight, rocking back and forth, feeling sorry for myself, and singing "Gloom, Despair, and Agony on Me" under my breath between slugs of Diet Pepsi and massive mouthfuls of chocolate. Then tomorrow, I'll get up, put my big girl pants on and start the battle again because there's one thing I know for sure.  It could be a lot worse.

The second blog I wrote was really doom and gloom, so I decided to go with the first one.  But I must say that I'm not as down about it all as I thought I'd be.  Ginger and I had a fabulous dinner at Through the Garden in Blue Ash.  She listened and just let me talk and get a lot off my chest.  Then she said all the right things, bless her.  So as I sit here now, I'm doing pretty well, just feeling a little disappointment.  And like I said, I know it could be a whole lot worse.

So, I got the TB test at 4:30 this afternoon.  Within 2 minutes of the test, I got the tingles and the itchies from head to toe.  I think I had a tiny allergic reaction to the serum or maybe that's what normally happens.  Either way, it was over quickly.  I go back Thursday at 4:30 again for the results.  When this test comes back negative, I'll celebrate it.  I'll be very happy not to have TB!  The test was interesting.  The last time I was checked for TB, the nurse used a thing that resembled a gun and shot the stuff into my arm.  That was many years ago.  This time, it's just a normal syringe and she inserted about an inch of the needle just under the skin.  Didn't hurt at all, which I really appreciated.  I haven't developed a fear of needles yet and I don't want to now.

I actually felt like doing my laundry tonight, so I must leave now and move the loads along.  Have a great evening!  Always remember and never forget. . . . .oh, never mind.  I forgot what I was going to say. :-)

Monday, May 23, 2011

Well, that just sucks eggs!

Do you know what happens when you go 3 months without blogging?  All of your Followers' little heads disappear!  That blows!  My blogger dashboard still says that I have my fabulous 4 followers, but all their heads are gone.  Bummer.  Take a little break while your body falls apart and the next thing you know, the Followers list is blank.  But maybe now that I'm posting something again, they'll miraculously reappear.  I tell you, you just can't trust technology.  If it can't feed me or bathe me in chocolate, I don't trust it.

I see we're all still here after the Rapture didn't happen on Saturday.  I was just starting to feel a little bit smug about that this morning when I heard about the tornado damage and lives lost in Joplin, Missouri on Sunday.  Took the bite right out of me.  Then, I got all paranoid wondering if maybe the date was wrong by just one day.

So we're up to 69 tubes of blood now and I've filled the little cup two more times.  Tomorrow afternoon, I'm getting a TB test, and sometime tomorrow I'll get the results of last week's tests.  I spent the day at Christ Hospital last Tuesday getting lit up with nuclear medicine, then having a full body bone scan, and finally having an MRI and then an MRA of my brain.  It was a busy day, you know?  I just stayed at the hospital all day since I had to report there at 11:00, 2:00, and 5:30.  I had lunch there and took a book to read.  I also had a half hour nap.

Nope, I don't know what all they're looking for.  Evidently, no brain tumors or anything cancerous looking showed up, or they would have notified me long before now.  So that's something to be mighty thankful for.  But I do hope something shows up that gives us a diagnosis.  I've been at this for 13 months now and all I get is more pain and more tired.  I'm ready to get off this train.

On the Happy Front, though, the better half and I are headed to New York City next week for a few days of fun and no doctors.  I can't tell you how much I'm looking forward to that.

I've been trying to come up with something funny to say, but my humorous bone doesn't seem to be working. :-)  I haven't been posting much because I'm just too tired, so it may be another 3 months before I'm back again.  (Except I will get on here tomorrow night and post the test results.)

Thank you all for hanging in there with me!

Tuesday, February 22, 2011

Shameless promotion for the PastaQueen

One of my favorite bloggers is the PastaQueen, otherwise known as Jennette Fulda.  If you haven't read the PastaQueen blog (www.pastaqueen.com), I order you to do so right away.  Funny writer, great posts, and she designs web sites, too.  If I ever get more than 3 people to admit that they follow my blog, I'm going to hire her to design a site for me.

Jennette's second book came out today, but let me start with her first book titled Half-Assed: A Weight Loss Memoir.  The woman lost close to 200 pounds, half her weight.  Her memoir about accomplishing this feat is heartwarming, laugh-out-loud funny, and sometimes just sadly real.  She can truly weave a story and her story is nothing short of amazing.

Her second book is Chocolate & Vicodin: My Quest for Relief from the Headache that Wouldn't Go Away.  My copy is on its way from Amazon.com, so I can't really tell you how good it is (although I know it's going to be good because her first book was so good).  But if you look at Amazon's product description for this book on their website, it says:

"Jennette Fulda went to bed on February 17, 2008, with a headache, and more than three years later, it still hasn’t gone away. Yes, she’s tried everything: intravenous drugs, chiropractic adjustments, acupuncture, subliminal messaging, marijuana (for medical purposes only), heavy drinking (which just made it hurt more), and lots and lots of chocolate. A pint of ice cream makes her feel better, but her insurance doesn’t cover mint chocolate chip.

In this painfully honest, smart, and funny memoir, the popular PastaQueen.com blogger who chronicled her nearly two hundred pound weight loss in Half-Assed shares her incredible journey to find relief from a chronic headache. As she visits countless doctors, indulges all manner of unsolicited advice from the Internet, and investigates every possible cause, from a brain tumor to a dead twin living in her brain, Jennette considers what it means to suffer, how to live with pain, and why the best treatment might be the simplest: laughter."

Like I said, I ordered my copy from Amazon.  The price was terrific, even with paying the shipping cost.  But wherever you prefer to shop, do yourself a favor and treat yourself to both of Jennette's books.  You won't be disappointed.  And if you want to thank me after reading them, chocolate and vicodin sounds good to me!

Ramblings and random thoughts.....

This is how I looked when I saw the light layer of snow on the roof of our house this morning.


My friends say, "It's just snowflakes!"  My brother Steve says, "It's February.  Snow is not out of the question."  Fortunately, since he's family, I can slap the snot out of him the next time I see him.  I can't help it.  I have finally reached that age where I can't deal with the snow, cold, and ice anymore.  I want the sun to shine every day and temps in the low 70's.  If friends and family haven't reached this point yet, it's not my fault that they're behind in their development. :-)

I do my best thinking in the bathroom.  I never eat in the bathroom.  I once worked with a woman who would take fruit and a book with her into the stall in the ladies' room.  That just creeped me out.  The book is fine.  If you know you're going to be a while and need something to do besides making dolls out of the toilet paper, a book is a good thing to have.  But food?  You've got to draw the line somewhere.  That just ain't right.  Anyway, where was I?  Oh yeah.  I do my best thinking in the bathroom.  Whether taking a shower or parked on the throne, I have some of my deepest and clearest thoughts in the john.

So last Thursday, I was settled all comfy-cozy in the stall in the ladies' restroom at work.  I was just sitting there, minding my own business, bouncing on the seat, immersed in thought----now wait a minute.  Don't go telling me you all have never done the seat bounce.  I know better.  And I can tell you from experience that if you have IBS, you're for sure bouncing a lot more than you're admitting.  Sooooo, someone comes in, takes a perch, does her business, and heads over to the sink counter to wash her hands.  I'm already giving her 5 points for flushing (you'd be surprised how many women don't remember to flush) and about to award her with 10 more points for washing her germy hands.....when she did it.  Instead of getting those fingerlets soaped up and clean right away, she grabs the paper towel container handle first and unloads a long sheet of paper towel.  I don't care how much paper towel she uses.  My brain is screaming because she slimed her potty germies all over the paper towel machine handle BEFORE she washed her hands.  YUCK!  I immediately bounced a few more times out of frustration and then took away every point I had given her.

As I said, I do my best thinking in the bathroom.  And what I realized last Thursday, just after I pictured myself disinfecting the paper towel machine with a flamethrower, is that I just don't care.  All right, I do care about getting a diagnosis sometime during my lifetime.  But using the BiPAP machine, losing weight, exercising, eating right----I don't give a flying rat's whiskers.  "BT" ("Before Therapy"), I would have not cared because I believed that I wasn't worth the caring about.  That was before "BT".  I know better these days.  But now, after "MHH" ("My Heart Hurts"), I truly don't care.  I watched as my sister died and then my mom died just 10 months later, and now I think, what's the point?  It doesn't matter, all this stuff.  Lose the weight, exercise, eat right, get your sleep, take your vitamins, eat those Omega-3's------it just doesn't matter.  We're still going to die.  I know.  Someone is thinking, don't you have anything to live for?  Don't you want to be at your little nieces' and nephew's college graduations?  If I can do that, it would be great.  But if I die before it happens, I won't know anyway.  I'll be dead.  I won't know what I'm missing.  I know it sounds silly and I'm not expressing it well.  I have more thinking to do.  But for right now, I really don't care.  Folks will probably get on my case about it all.  I have only one thing to say about that.  DON'T.  Some things you just have to work through on your own.

I don't know why I don't weigh less than I do.  I really don't eat gobs and gobs of food.  I don't exercise much, I know, but between the butt bouncing, leg jiggling, teeth grinding, lip chewing (that takes more muscles than you realize), keeping time with the music, and all the body tics I've got going all day long, you'd think I'd be a lot thinner.  Which brings me to Dr. Evil.  I see her on Thursday morning, at which time she will note that I have obviously not lost any weight like she told me to start doing six months ago.  In the meantime, she has been dieting and I'm betting that she is down to my size now and probably less.  I'm pretty sure that I'm going to need 3 hash browns and a cinnamon melt from McDonald's after my appointment to comfort me after she gets through with me.  Of course, I'll wash all that down with a Diet Coke!

Tuesday, February 1, 2011

So I got my test results......

…..and they are Negative and Negative. I don’t have Celiac Disease. There are no tumors on my parotid glands. I’m a mix of being grateful that nothing bad was found and being upset because we still don’t have a diagnosis after almost 10 months of testing. The afternoon I got the results, I took the rest of the day to be verklempt and grumpy and feel sorry for myself. The next morning, I sucked it up and started being strong again. But I must admit, this is really wearing on me.

As long as I’m admitting things, I haven’t used my Bi-PAP mask and machine for at least 2 months, maybe longer. I just can’t stand the thought of having that thing on my face. It’s too confining and I’m a little too claustrophobic. Not that I need to explain it. The picture says it all.


I’m just not dealing well with it. Unfortunately, I need to because sleep apnea can kill you. So, once again, I’m going to have to suck it up and be strong.

I’m tired of being strong.  And now I'm whiney, too!  I think I need to just get over my fine self and put a big smile on my face right now!

There, that's better!

Is anyone else hearing tree limbs cracking off and dropping onto their roofs?  It's happened 3 times here in the past 15 minutes.  We had the lovely ice coating everything except our driveway this morning, so I had to show up at work.  I'm grateful to have a job, really.  It just would have been nice to work from home in my jammies today.  But I've been going outside to check the roof and our driveway is now coated with a shiny sheet of ice.  And tomorrow I want to go to work because it's Skyline day.  I can't miss lunch at Skyline!

Well, obviously, I have nothing interesting to write about, so I'll just sign off like the guys on my favorite show "Wipeout" and hope that the next blog will be much more entertaining.

Good night.....and big balls!

Monday, January 17, 2011

Listen to the whining and then you can see the skating foot.....

It must still be Christmas because I’m still eating anything that doesn’t move. On the other hand, Christmas must be over because we finally put away the Christmas decorations last Friday…..Friday, January 14th. I’m starting off the new year a little late, it would seem.

I hope everyone had a fabulous Christmas, being with family, eating the holiday cheese ball, and stepping on the Chex mix. Yep, stepping on it. I always manage to drop a square or two of cereal when I’m making the mix, and I swear that I crunch it under my shoes for 3 months. Where does it hide when everyone else is tromping through the kitchen? It’s only out on the floor when I’m walking on it. I’m starting to get paranoid about it. It’s a conspiracy, I’m sure.

Anyway, I haven’t been blogging because I was working a lot, being poked/prodded/tested a lot, and trying to get ready for the holidays. So what shall we catch up on first? The poking, prodding, and testing? Okay, let ‘er rip!

Since we were last here, I have seen Dr. OhMyAchyBody. We are now up to 44 tubes of blood. The SED rate is still up there among the clouds. And this time we drained some blood for a Celiac Sprue Panel, testing to see whether I have celiac disease. I also had 2 MRI’s, one without contrast dye and then one with contrast dye. I am just claustrophobic enough to be bothered by lying in an MRI machine like a dead body stuffed into a way-too-small coffin. Not only was it very confining (my nose almost touched the ceiling of it), they had my head in this vise thing and strapped every way but loose. I was not amused. The MRI’s were to get the goods on my parotid glands—to see if there was inflammation or a tumor or whatever. Now, I had the blood drawn at Dr. OhMyAchyBody’s office. I said to the nurse, “I’m a little concerned about this particular round of tests. Please have someone call me with the results.” A week or so later, one of the nurses at the office called me about something else, and I asked her, “Please have someone call me about these test results.” At which time she informs me, “We don’t call with results if they don’t show anything.” I told her that I knew that, but these tests were very different from what I had been having and I wanted to be notified about the results. The MRI was on December 14th and I had the blood labs done on December 10th. Have I heard from anyone? NO! OF COURSE NOT! Not that I’m bitter or anything. :-) But how do I know that my test results haven’t just fallen through the cracks or something? So tomorrow, I’m calling them again and using my charm to get the stinkin’ results. I’m fairly certain that I don’t have celiac disease or tumors in my spit glands, but doggonit, I want to know FOR SURE.

So I see my ophthalmologist later this month. Then it’s back to the dentist, Dr. Dracula, and Dr. OhMyAchyBody next month. I also saw a dermatologist earlier this month (Dr. SheKeepsMePretty) and got a good report from her.

I was transferring information from my 2010 planner to my 2011 planner, and I now have 12 doctors—TWELVE—that I see on a regular basis. Isn’t that just a little excessive? Wouldn’t you think that one of them could figure out what’s going wrong with my body? God love ‘em, I shouldn’t say that because they’re all very good and trying very hard. I’m just getting a little tired of all this.

No more whining! Let’s talk about something fun! You all need to see our little Christmas tree. I don’t much like decorating a Christmas tree and I like un-decorating one even less. Also, by the time I do Dad’s tree and decorations, I just don’t want to do another one. But I help put up a small one at home and I always end up being glad when I do. This year, there was something a little different under our tree. Check it out.

Do you see something that doesn't belong there?


Here's a better view.


Yeah, nothing says "It's Christmas!" like a cat butt under the tree!  "Butt" to be fair, I should probably let you see the other, more pleasing end of Louise the Wonder Kitty.


She's a pretty girl.  Of course, now her sister Thelma wants her picture here, too.


Now that I've bored you with pictures, I'm going to bore you with more pictures.  But these are worth it.  Every year at my Dad's house (and formerly Mom's house, too, rest her soul), we set out the skating rink by the Christmas tree.


It's just a cheap thing that I picked up many years ago to amuse the younger sisters and brothers.  Now THEIR kids love playing with it every Christmas. The skaters "skate" because there are magnets on the bottom of their bases that follow a set path that is inserted beneath the pond.  I know what you're thinking.  "Hmmm, I see two sets of skaters, but what's that lump?"  That, my friends, is the skating foot!


Sometime, somehow, the beautiful figure skater doing the figure-8's was separated from her foot, unable to be fixed, buried in the trash can.  And now the foot skates all alone, searching and longing for the body it once had.

That's my story, and I'm sticking to it!