Saturday, November 29, 2008

The Audacity

I am fuming. I watched the news this morning and saw a story about a Wal-Mart employee in New York being trampled to death as he was opening the doors on "Black Friday." I wanted to puke. A mob of greedy, selfish people literally stomped a man to death so they could be first to the best sales. What a tragic commentary on the state of our country. The good ol' USA, where you, too, can get the job of your dreams at Wal-Mart and be crushed to death by a bunch of "civilized" savages. UN-believable. All to "get a deal." I wonder what kind of bargain this man's family feels like THEY received. All to be first. It is so sad.

Another time I felt this way was when my son was born, and was in the NICU on a ventilator, fighting for every tiny breath, and my current pastor came up (about 1 1/2 weeks after Jacob was born) and told us about how the church was in a huge uproar and dividing over a softball game. Yes, a softball game. Now I would like to think I'm an open-minded, compassionate individual. But when I looked down at my son, lying on a pillow in my arms, with a tube down his throat so a machine could breathe for him....I almost lost it. I was filled with rage. It took all that I had not to scream and yell at the audacity of people to be so self-seeking and egocentric about a freaking BALL GAME, when MY SON was alive because of a machine. I was disgusted.

I am far from perfect, I will be the first to admit. I'm sure lots of people could name several character flaws in me. But these behaviors I just talked about take on a whole new level of self-centeredness. I cannot even fathom how this society's priorities got SO messed up. I mean, there's messed up, and then there's M-E-S-S-E-D up.

This world is crumbling and breaking and spinning out of control. The physical earth is damaged, and the people running it into the proverbial ground are greedy, self-regarding imbeciles. I'm just in awe at the lack of respect for human life on every level.

People using people, things, power, whatever they can to one-up the next guy. Seeking self-fulfillment, self-gratification, self-reliance. Self, self, self. God must look down and just weep at His once perfect planet and people. May He forgive us all.

Tuesday, November 25, 2008

Udderly great!

I know, I know....Punny.

Seriously...I called my trach doc and asked what the heck to put around my trach because it's so raw and sore from all my coughing and suction. They said "Bag Balm. You know, the stuff you put on cow udders."

Um, excuse me? Did you say COW UDDERS? And you want me to put this on my neck??? Now I'm a city kid, transplanted to the country. Apparently this stuff has been around longer than dirt, and EVERYONE knows it's fantastic for sores, burns, scrapes, whatever. Mooooove over antibiotic cream. Hardy har har. I kill me.

Anywho. My neck is still pretty sore...it's not as bad as yesterday; it's not as pins-and-needles-stabbing pain and more like bumped-and-bruised-and-swollen pain. Which really is better. I think I'm going to take it out and clean it again....Maybe I can reposition it a little bit so it's less sore. It's gonna hurt like a bugger going back in though. No fun!

Doug's out hunting again, surprise, surprise. I heard a shot a few minutes ago...don't know if it was him or not.

Well....that's it for now. Wish me luck with the cow cream.

Monday, November 24, 2008

Spending Fast

Doug and I read this article a couple of months ago in the Reader's Digest that really piqued our interest...A family decided to go an entire month without spending any money, except for things like bread, milk, and fresh vegetables. Also gas, but they budgeted "X" amount of dollars, and tried to ride their bikes as much as possible. I think they had like $100.00 for the month for these "necessities."

They ate what was in the house, in the pantry, freezer, etc. They didn't go to any movies, visit Starbucks, rent movies, go grocery shopping, stop and buy a pack of gum or a magazine, nothing.

Doug and I have decided to take this challenge in January. I keep saying that we have a budget, every penny is accounted for, yet we always spend more. SOMETHING always comes up... vet bill, new tires, whatever. And we're trying to pay cash for everything, but that's tough! We are working toward being debt free (other than our mortgage) in 4 1/2 years.

Anyway, the couple who did this spending fast ended up saving almost $2000.00!! Now I know we'll never save that much, because we don't do things like spend $3.00 on coffee every day, go out for dinner very much, go to movies and stuff. But we are going to tighten the belt, and eat what we have in the house, and not buy ANYTHING. I'm excited to see how much we can save, and hopefully find ways that we are able to save more money each month.

Something to think about! We aren't doing it in December because of the holidays. And starting a New Year with a new plan seems appropriate.

I will keep you posted on our progress!

Sunday, November 23, 2008

Thanksgiving Every Day

Good morning....

I get this e-mail called Moments with You from the Raineys...sometimes they're fantastic, sometimes okay...This one really spoke to me, as I have been going through some difficulties as of late. It seems as if it's not one thing it's another. I am going to read this EVERY day... and hopefully get out WAY before 40 years!!! (And before you say you have absolutely NOTHING to be thankful for, you ARE reading this, so you can see. If someone's reading it to you, you can hear.) We ALL have something.

Thanksgiving Day after Day
by Barbara Rainey

He who offers a sacrifice of thanksgiving honors Me. Psalm 50:23

Has it ever seemed surprising to you that God made the Israelites wander in the wilderness for 40 years just for grumbling and complaining? My kids may have spent 30 minutes in their rooms for griping, but 40 years? That's some severe discipline!

One thing is crystal clear from this biblical account: God is obviously not pleased with grumbling, ungrateful hearts. And we should not tolerate grumbling either--in ourselves or in our children.
Being grateful is a choice that we readily and ritually express on Thanksgiving Day. But what do we do on other days of the year when the mood is less festive or the atmosphere is more ordinary?

I like the contented way the Pilgrims approached life. They did not allow their feelings or circumstances to determine whether or not they would exercise gratitude and thanksgiving. They believed that God was in control--"providence," they called it. Following this belief to its logical conclusion, they responded to challenges with a perspective that said, "God has allowed this for our good." They chose to believe--rightly so--that their dependence on a holy, faithful God was well placed and that even though much was against them, there was always much more for which to be grateful.

Developing a heart of gratitude is essential to growing a stronger faith. As John Piper stated in his book A Godward Life, "If we do not believe that we are deeply dependent on God for all we have or hope to have, the very spring of gratitude and faith runs dry."

Make the choice today to take your eyes off yourself and your circumstances, gratefully acknowledging who God is and what He is doing. Deny yourself the right to complain, embracing instead the deep-seated joy of thanksgiving . . . in all things.

A grateful heart pleases God.

I would hope and pray that we can all take this attitude forward. (And I am DEFINITELY preaching to the choir here...) It doesn't mean that we're not going to have cruddy days. It CERTAINLY doesn't mean everything's going to come up roses. But we live in a broken, dying world. Most things around us are broken or dying. That's just a fact. So let's try not to add to that, but somehow CHOOSE to be thankful. Even if you can tell God you are thankful for ONE thing a day. If will at least focus attention where it needs to be for a moment....and then possibly another, and another....

Today, I am thankful for technology. I am thankful that I have this computer to "keep in touch" when I'm not able to get out much. I am thankful that I can receive devotionals and encouraging news from friends. I'm thankful I can use this to learn more about God.

How about you??? What are YOU thankful for today, right now?

Thursday, November 20, 2008

Things That Surprise You When You Clean

Well, I am thankful that I get in these "moods" sometimes, because almost all my sentimental bones (and there are quite a few) seem to go dormant, and I'm like, why in the world have I been hanging on to THIS for ten years???? You know the rule "If you haven't seen it/used it/worn it in a year, get rid of it?" More like 5 years here.

Found Jacob's other green sippy cup. In the office. Buried under dust bunnies, some ammo in a camoflouge bag, some Creative Memories stuff, and a box. The office has become the catchall. It was supposed to be "my" room, for Creative Memories, computer, etc. But since Doug's biggest gun cabinet is in here, we have the inevitable gun paraphenalia. I hope that last statement doesn't like, flag the FBI or anything. It's ALL LEGAL.

I got a bunch of Creative Memories stuff that had been Linda's, and I was going through that too. One box was pretty harmless, had lots of cool bags, t-shirts, stuff like that. The other one had a bunch of product in it with prices on that she had written, a couple of albums that she had pre-made (so you can just add pictures and journal)...the stuff with her handwriting on it was tough.

It's just second nature to think "Linda." Linda would love this! Oh my gosh I can't wait to tell Linda..... I wonder what Linda thought of that Rachael Ray episode? TV shows that come on that she used to love. Books I have that I never got back to her. Stuff I find while I'm cleaning...a note from her, a card, a gift. Now Thanksgiving is coming, then her birthday, then Christmas, all within one month. The first Thanksgiving without her....the first birthday without her....All the firsts. Please remember her family in your prayers through this time also.

So many memories....everywhere I look. It's good and bad, ya know? I mean, I don't want to EVER forget the feelings and wonderful memories that such things evoke, yet it's still soon enough that what little has mended in my heart seems to be torn open again. I love you Linda. And oh, how I miss you.

Wednesday, November 19, 2008

Seeing Double

The ONLY good kind of Double Vision is the song by Foreigner.

This is making me CRAZY! This will be short because the strain on my eyes in insane. I seem to be feeling better, but the eyes are just NOT cooperating. ARGH. SO frustrating. And it's SO draining and exhausting. The headache, the muscle strain from keeping one eye shut...the depth perception issues...

Okay, I'll quit complaining now. Please pray this goes away POST HASTE!!!

Monday, November 17, 2008

Hunting Widow Bakes Herself to Death

Doug was out til almost 7:30 tracking a buck last night. He knew he hit it, found the blood trail, but it was so dark he couldn't find it. His little caveman headlamp thingy burned out, so he was stumbling around in the dark before coming in to get his spotlight and the tractor.

But he finally found it. I could tell because of the way he greeted the dogs:

First time he came in after looking and not finding the deer: "Moose! Get in here! Stay! Stop it! Back up! Get off me!"

After another hour of searching and finding the buck: "Hi guys! Are you my good puppies? Are you my good little doggies? {pet pet}"

SUCH a man.

I've been baking Christmas cookies. Lots and lots of Christmas cookies. Jacob likes to help dump stuff in the bowl, and the dogs love it! (We miss sometimes). It's been a long couple of days, I'll tell you that much! So now he has 2 deer, pretty good size ones, and the butchering will soon begin. Thank God it's cold. I always freak out when it's about like 45 cuz I'm thinking germs!! Oh, and of course last night we had to bundle up and go outside to take pictures of the dead animal. I have no problem with hunting, as it provides most of our meat, and saves lots of deer from getting creamed by cars or starving. Jacob thought it was pretty cool. I was like, here we go....

So hunting season lasts like 2 weeks or something, then muzzle loading.... so he'll get more deer. He always gets one for his parents...if we get extra we'll pass it around! Doug says it's going to be a hard winter because the deer had thicker layers of fat on them than he's ever seen down here. I'm like, LOVELY.

Also been making stuff with Jacob. We made a big shaker the other day (plastic cups decorated with tissue paper and stuck together with beans inside). Yesterday we made snowflakes and stained glass (you iron crayon shavings in between 2 pieces of wax paper). I'm NOT the artsy type, so all this is a stretch for me, but Jacob really likes it, so....

It's going to be a loooooong winter!!!

Saturday, November 15, 2008

BAM!

Hubby finally came in from the dark and cold with Deer #1.
And so it begins....

Thankfulness

Well, Hallelujah.

Everything went great with my treatment, the needles barely hurt at all, we got there early and got out early, treatment ran smooth, and my neuro stopped up to see me. Everyone was like, Oh you look SO much better. I was like, yah, I'm not turning into a giraffe anymore. (Although a little extra height wouldn't have been bad...I could do without the spots).

So the neuro said I could cut down my prednisone time level and get off it in 4 weeks instead of 8. THAT, my friends, is wonderful news. Predisone is like a cure and poison all in one.

Hopefully now my eyes will get back to "normal" and we can get on with this thing called living. I was asking my neuro about why the eyes are so difficult to maintain control of in MG, and he basically said because they have to work PERFECTLY in order to see right. If your neck or shoulders are weak, or off by 10%, no biggie....you probably wouldn't even notice. But if your EYES are off even 2%, you'll see double. I was like, well, I guess that makes sense. The way the muscles work in the eyes are unlike any other set of muscles in the body as well.

Made me just think again at how much we take for granted. Before I got sick, I took advantage of every breath I took. I just assumed there'd be another following it. I never in a million years though how grateful I was that my arms didn't get weak when I folded laundry. Or that I didn't choke when I swallowed, or that I could work full time. While I appreciated my eyesight, I never really thought about the complexity in which God created it to work.

Made me also think of having a healthy baby. There are so many MILLIONS of things that have to go EXACTLY right to have a healthy, "normal" baby, and yet this happens thousands of times a day around the world.

For many of us, I fear, myself included, we assume so much. Until something "bad" happens, until the health isn't there, or the job, or the friend, or the sister, or the parent...until we lose something, we often don't appreciate it nearly enough.

Well, for the record, I am SO thankful for my eyes. I am SO thankful that I can see and hear, and walk. I'm so thankful that I have friends who love me. That I have an amazing husband and perfect little boy who both enjoy terrific health. I am thankful for medical technology that has saved my life over the last 8 years. I am thankful for skilled surgeons and people who invented more comfortable trachs so I can breathe better, and not have to be stuck in bed on a ventilator.

Most of all I am thankful that I have a God who tolerates my lackadaisical attitude and loves me wherever I am. Who won't give up on me no matter how ridiculously childish I become, no matter how spoiled I act, no matter how much at times I may grieve Him. I am thankful that He is faithful when I cannot be, because He cannot be untrue to Who He Is.

So today, just for a moment, think of something you might not normally take the time to be thankful for. Something you take for granted. And Bless God that you have it.

Thursday, November 13, 2008

Oh to be NORMAL

So I get a call from the dermatology clinic at the U of M this afternoon saying that my tests came back "not consistant with Sweet's disease." They have a few more stains to look at to double check, but wanted to at least call to see how I'm doing.

I'M CONFUSED to say the least.

Right away I'm thinking, so the huge chunk they took out of my OTHER arm was basically for naught.

I'm also thinking so what the heck is/was it??

They say it was probably something called "granulomatous drug eruption," a rare reaction to the anti-biotic I was taking for the sinus infection I don't know if I really had as a result of the flu shot I will NEVER get again.

I can't find anything in English about this granuloma crap, so I'm not even sure what questions to ask. The doc just said don't ever take that drug again, or any in the same family. Lovely.

Just for ONCE I would like a doctor to say, "Oh my gosh, I know EXACTLY what this is, it's NO BIG DEAL and we have the PERFECT way to treat it that won't cause any pain, and doesn't cost a fortune.

Pardon me while I scoop myself up off the floor of utopia.

Stand Back

Well, as much as I hate Prednisone, it IS a miracle drug. Kind of the love-hate thing again. It works in so many situations where NOTHING else will, yet the side effects are horrifying.



After only ONE dose of Prednisone, my joints felt better the following morning. After two more doses, the pain was completely gone. The spots are almost gone, and my biopsies are healing nicely. They look pretty horrible right now, but I can tell they're healing correctly. I might have a little ripple in the research arm. I should have asked to see the size of the sample before I agreed!!! Nah, I would have done it anyway. If someone else can be helped by all the garbage I have been through, all the better!

On another health note, I got a letter the other day saying that because I am on disability, I have to start using Medicare as my primary insurance. AND PAY $97.00 a month for it!!! I was like WHAT?!?!?!?! Are you KIDDING me?!?!? I have fantastic insurance through Doug's work, and it only costs a little more than $97.00 for our whole family! I am NOT happy. I have to call the SS office and make an appointment to find out exactly what's up. Then, Doug has to change his insurance to 2 people (him and Jacob) with supplimentary for me, which will cost MORE that our plan right now, and half of my stuff won't be covered. Supposedly there is no prescription coverage. I spend $2500.00 a year in COPAYS...My CellCept is like $600.00 a month....I'm trying not to freak, because I know something will work out...but this is my worst nightmare. As far as supplimentary insurance, who the heck is going to take me with all my pre-existing conditions??? ARG. Not to mention plasmapheresis...like they're going to cover that every 3 weeks??

At first I thought this was Blue Cross doing this, to scare us or something, but it's actually a federal mandate. FEDERAL. As in GOVERNMENT. Even though people just elected a Socialist president, I thought we still live in a capitalist, free-to-choose-at-least-our-health-insurance country. You know, the whole Land of the Free thing??

I'm just furious. As soon as I have all the details from SS, I will be writing every government office from City to County to State to Congress...I'll probably e-mail the dang president. The one we still have anyway.

Well, I better stop so I can put the fire out that's coming out my ears.
Oh, one more quick bit of advice...If you're healthy now, get life insurance. As soon as you get REMOTELY ill, you won't be able to get it from ANYONE at any cost.

Sunday, November 9, 2008

The newest Cheetah girl?

Okay.

So I go to Ann Arbor for plasmapheresis, but they take one look at my spots and say, OH no. They said they weren't going to start the treatment until my neuro came up. I asked them to page him and tell him that, because sometimes he comes up half way through the treatment.

I think some of the nurses thought I had MRSA. Nope. I could hear a couple of them whispering. I was like, oh for crap's sake it's not MRSA. Dr. Teener said he would try to get me into the dermatology clinic right away, but if he couldn't, I should go to the ER.

Now let me tell you something about U of M's ER. Last time I was there, I couldn't swallow, couldn't breathe well, my face was paralyzed, I had NO muscle tone and was in a wheelchair. We got there at noon, and I got into a room at 2 in the morning. I can't IMAGINE how long I would have been there with a skin condition!

Thank the Good Lord that I got into the derm clininc right away. After about 10 minutes, the doc went out to confer with her attending (it's always like this at the U of M. They send the newbie in first for practice or whatever, then the big guns come in and you get to tell your story all over again. AND get charged twice. Gotta love America.) And because it's not something they see every day, every intern, med student and other "helpers" came in to my room 2 or 3 at a time....once I think there were 5 in there. They all timidly knocked on the door and asked if they could come in and look at me. I thought about charging admission, but declined, for the greater good of mankind. Sure.

So they rather quickly concurred that I had something called Sweet's disease. See www.emedicine.com/derm/topic11.htm for some great information. The only way to confirm for sure is to do a biopsy. I'm thinking, tiny piece of skin, no biggie. Well, it was a shot of lidocane to numb it, and then a CHUNK came out that required stitches. Oooookaaaayyy. Then they asked if I would be willing to participate in a research study they were doing on Sweet's to try to determine the exact nature of the disease, why some people get it, why some don't.

So I say, sure, why not, if it can help someone else. What's another hunk of skin? I've got plenty to go around! So this other doc comes in and take a much bigger hunk of skin, about the size of a number 2 pencil eraser (never used.) Not so pleasant that one...he's like, oh look, isn't that cool! It's just like a hole in your skin...so I made the mistake of glancing down and seeing a hole in my arm filling with blood....Good thing I was sitting down.

So anywho...all said and done, I got 30 bucks for the second biopsy, which I didn't know I would get, and Jacob got a cool stick horse! I have to take Prednisone which is a miracle drug, but it's HORRIBLE on your system. Within 2 doses my joints felt better. But it makes my blood sugar go through the roof, and makes you moody, hungry, and gain weight. That's ALL I need.

So here's to me...spots and all...what could be next??

Wednesday, November 5, 2008

Fox in the Henhouse?

Well, it's over. The election I mean. I still held out hope until Obama won Pennsylvania and Ohio. Then I knew it was all over but the cryin'.

I PRAY that Christians use this opportunity to mobilize...to pray like never before for our House, Senate, President and country.

PRAY that this country will repent of her wickedness, turn from her evil ways, and allow God to heal our land.

PRAY that Obama will not be deceived. Pray that the American people will not be deceived!

PRAY that God will move in Obama's heart to change his opinions on things like abortion and homosexual marriage.

PRAY for our troops, as this new presidency may impact them immediately and severely.

PRAY that this country will unite...One nation UNDER GOD, indivisible. INDIVISIBLE. Unable to be divided. The die has been cast, folks. Now we have to run with it. Being ugly and bitter (okay maybe for a minute) won't do any good, because you can't change a thing.

And let's not forget the most important thing of all: God is STILL God. He is STILL on the throne. He is STILL in control. He answers to NO man. It is HIS purposes and plans that will prevail. Do not let fear strike your hearts, but KNOW that God is bigger than the office of the president of the United States.

Monday, November 3, 2008

Spots and Polka Dots

Ug. So I finally got rid of this headache I've had since October 15. How do I know it was since October 15? Because that is when I got the flu shot my doctor kept harping at me to get. For four days after that, I had the worst headache and chest pain I've ever had. The next day all is well, until the afternoon when I get the headache back. And so it went every day until this past Wednesday. Then it was so bad I had to go to the doctor. Sinus infection. Second worst headache I've ever had in my life. Doc gave me pain pills and a stong antibiotic. Friday I was in bed all day...Doug had to come home from work at 8 in the morning. I am NEVER in bed all day.

So Saturday my headache is coming and going a little, I finally have some energy to clean up, and I notice little splotches in a circle around my elbows of all things, and down one arm. It's not hives, because it's not very itchy. It does feel almost like a bruise when you touch it. Lovely.

So today, Monday, I went back in to the doctor to find out what was up. I'm thinking shingles, lupus (too much internet...I DID have all the symptoms for lupus except the butterfly rash...just goes to show you can't jump to conclusions!!) So he looks at me and says, "This isn't a typical reaction to antibiotics." I say, "I'm not your typical girl!" So he checks me all out and concludes that this is a serum reaction (serum in something in your blood) similar to vasculitis. I'm like, um HUH? And I'm pretty fluent in medical-ese since I am a professional medical patient!

Then he said it was an immunological response to the antibiotic. That I got. If I didn't have MG, I probably wouldn't have had the reaction. So because the antibiotic will be in my system for at least another 4 days, it might get worse before it gets better; or at least "linger." Nice.

Anywho...on another note....two "firsts" for Jacob tonight, within about 2 minutes of each other. After his bath we were getting our jammies on, and Doug sneezed in the bathroom. Jacob yells, "Bless you Daddy!" Never said that before...it was precious.

Then as he was launching himself off the changing table at me to give me a "big hug" he ripped my trach out. Not so precious.

I knew it would happen eventually. I had just taken it out and cleaned it, and thankfully I caught it so I didn't have to clean it all over again. Just popped it back in....well, mostly : )

Oh the joys of life!!

P.S. I will NEVER get another flu shot as long as I live!!