Thursday, October 30, 2008

You Know You're A Mom When....

I noticed myself doing some rather silly things the last few weeks, and thought, I have done SO many things I SWORE I would never do that MY mom did...(even though I had a great mom... she was so OLD, ya know : } So I thought I'd share of few of my "You Know You're A Mom When...." Feel free to chime in with your own!

....you make your "to-d0" list with a crayon.

....you wipe the snot from your baby's nose WITHOUT a kleenex. (Same goes for grabbing that booger a la natural on the hands.)

....you know what time and channel every episode of Diego, Dora, Little Einsteins and Backyardigans are on.

....your son has more stuff recorded on your DVR than you do.

....you stop hoping that your husband will jump up and say, "here, honey, let ME change that poopy diaper!"

....you learn it IS possible to go a week without a complete shower and you won't die.

....you realize there is a lot longer way to go to the edge of sanity than you thought!

....you lick your thumb to wipe the schmutz off darling's face (even, horror of horrors, in public!)

....you lick the palm of your hand or fingers to smooth his hair.

....you totally understand now when you see your own mother sitting in a dark quiet room doing nothing.

And best of all, you realize that there is nothing this child could do to make you stop loving him, that he is the greatest gift God has ever in His mercy decided to bestow on you. You realize when you look into his eyes you are looking at all the best things of you and your husband combined. And you would do anything for him. You want to protect him from the world, yet know you have to prepare him for it. The thought of him hurting breaks your heart, and brings out THE Momma Bear. (Just ask our former rooster).

You realize that this is the hardest job you'll ever have, but by far the most important. You are raising the future, and literally molding a mind, and teaching a child to live for and love the Lord.

To my precious miracle baby: Mommy loves you Jacob!!

Wednesday, October 29, 2008

Don't Need Four Walls

Wow. As I reflect on the last month or so, it's amazing to me how God has shown me that I do NOT need to depend on His church to meet my needs, but rather on HIM. A wonderful friend e-mailed me about 6 weeks ago, and said that there was a wonderful lady in her Bible study that asked if she knew anyone who needed help one morning a week. This friend said the Lord brought me to mind. So, she and this lady, Dina, came out to the house.

Dina is awesome. Oh my word. Jacob loved her the second he laid eyes on her. She played and played with him, giving me a wonderful opportunity to just talk and fellowship with my other friend. She asked if I needed cleaning done, or whatever...she would do anything I needed.

She started coming the Tuesday after my dear Linda died. She brought me a card and gift. THIS WOMAN DIDN'T EVEN KNOW ME....and yet God placed me on her heart, and she was willing to follow His guidance. Every week, not only did she play her heart out with Jacob (I was exhausted just watching them!) she brought something every week....dinner one week, dessert the next, soup the next. And we got to just talk and get to know one another. What a precious, precious woman.

I was so blown away by her graciousness, and how God helped me like that after my last church debacle. It's like God was just saying, you don't need a building, you just need me. Lately, many of my friends have just been coming out of the wordwork to love me and support me, to visit me, to just chat with me....and to all of you I say a hearty thank you.

Words aren't worth much if they are never backed up. You ARE the hands and feet of Jesus. You have shown by your actions, not just mouths, that you love and care for those who aren't perfect.

You have walked out what so many churches have failed to do: Feed the hungry. Clothe the naked. Visit the sick and imprisoned. And I pray that the bounty of God would fall out of the heavens and bless your socks off!

Love to you all, my dear friends, for showing me the love of God.

Monday, October 27, 2008

Disappointment

One of the worst things EVER is disappointment. Even when I was younger, nothing was more bitter to me than being let down. Whether it be a person, cancellation of an event, weather problems, illness, whatever it was didn't really matter. What drove me crazy was just the fact that my plans weren't going to happen the way I wanted them to. (I can hear God chuckling!!)

So when I was diagnosed with MG, I learned a whole new level of disappointment. I was forever missing events, cancelling plans, just not physically able to attend or participate. With the MG, I used to rest a few days, even a week before something was happening that I really wanted to go to. I figured if I saved my strength, I would for sure be able to go. I found out that this was not necessarily true.

This happened with Linda ALL the time. I would plan on going over to her house, or out for lunch or something, and I would try to just rest ahead of time, not stress out, just relax, even if I felt good, and strong, and like I wanted to do something. And then the day would come and I would STILL feel like poo. Of course Linda being Linda was SO understanding, and I would usually be way more upset than she was.

So now, when I feel good, I go for it. I do something. I don't wait for a planned event. I put the event on my calendar to reserve the date, I may look forward to it, but I don't COUNT on it like I used to. And if I feel good the day before, I still do something, because I don't know what tomorrow holds. Case in point, I really wanted to start going to Bible study last night. Well, Friday I felt fantastic, so we went on a road trip (see below). Saturday, amazingly, I still felt good, so we did our grocery shopping. Sunday morning, I was tired, but felt okay. As the day progressed, I went downhill rather quickly. So I missed Bible study.

You know, though, we really ALL need to live for today. NONE of us are promised tomorrow. Don't wait til tomorrow to call that friend. Don't be afraid to say I love you. Don't wait til tomorrow to make SURE your kids know you think they are amazing. Don't wait to tell your husband that he is your hero. Don't wait to send that card, or make that visit. You may never have the opportunity again. You can never get back THIS moment. Don't waste it.

Carpe diem.

Sunday, October 26, 2008

Road Trip!!

Friday was Jacob's first real road trip! We left Friday morning and went to Michigan City to the outlet mall to shop a little. It was awesome because we got there like 15 minutes after they opened, and it was like a ghost town. Jacob loved it because he was able to run around outside like a crazy man. He would run up ahead of us on the sidewalk a little ways, then we'd say "Stop!" and he would immediately stop and wait until we were about 3 feet away, and we'd say "Go!" He was having a blast.

The only thing I HATE about going anywhere with a little one in diapers in changing them. Jacob hates those baby changing thingy's...I think he feels unsafe. I hate them because I have to hose them down with antibacterical wipes before either of us touches it. I can't even really THINK about the germs on those things or I'd probably just go catatonic.

Anyway, from there we went to Cabela's!!! I was so excited to think of Jacob's face when he saw all the animals there...especially the elephant!
He has a blast. He kept saying "Deer! Another deer! ANOTHER deer!" He just couldn't believe all the animals. If you've never been to Cabela's, and aren't anti-hunting, you MUST go. You don't have to spend a dime, you can walk around and see all the animals, and they also have an aquarium. They have a cafe that serves elk, bison, even ostrich, but you can always get a good ol ham sandwhich or something too!


On the way home we stopped back to Michigan City to a party supply store that we were told about that sold costumes. We had gotten Jacob an elephant costume at Costco, size 2-4T. Um, yah. WAY too short. So we needed another costume pronto, and couldn't find anything. So we get to this store, and they have literally hundreds of costumes. They had picture of them with numbers on them, kind of like in a T-shirt shop where you can make your own shirt. They had 2 or 3 people helping people pick the costumes and stuff.


We basically found 2 that would work, a tiger or a dalmatian. Jacob wanted the "pup dog." So we got the dalmation costume for FIVE BUCKS. It was 75% off! Sweet!! So Jacob is thrilled, we're thrilled, and we're going home.
Of course Saturday we tried the costume on, and he just screamed and kicked and threw a fit.
So he's going to be a cowboy.

Thursday, October 23, 2008

Sleep Deprivation

I've stated in an earlier post how I admire John McCain for his fortitude while being tortured daily in Vietnam. Approximately 2000 days in a row he was beaten, battered, and bruised. But he did not break.

I tell ya what. All I would need is to not sleep for a couple of nights, and I'd tell them anything if they helped me sleep!! (Although any tool or torture would assuredly get my gums flapping...I don't know HOW he did it.) I am NOT good on little sleep. Lately I have been waking up between 3 and 4 AM and not being able to go back to sleep. I lay there, too warm for comfort, tossing and turning, trying to get comfortable.

I sleep with oxygen and a compressor for moist air for my trach, and not only are they loud, they emit an IMMENSE amount of heat. So even in the winter, I sweat. I HATE sweat. Especially when I sleep. Then Doug crowds me or puts his 500 degree arm around me and I'm ready to jump! He's like a branding iron, I swear. His body temperature has GOT to be over 98. He radiates heat. You could probably roast a marshmallow over him.

Anyway, sleep deprivation is not great for the MG, or dealing with an extremely energetic 2 year old. Lord willing and the creek don't rise, we'll live to see another day!!

Sunday, October 19, 2008

MG, the Snowflake Disease

Hey everyone.

They call MG the snowflake disease, because while snowflakes all have many things in common, each one is distinctively unique. (They should call in the pain-in-the-rump-one-minute-you're-fine-the-next-you're-on-the-floor-because -your-legs-gave-out disease, but I guess that would take too long.)

Anywho. There are many, many things that myasthenics CAN'T take: like magnesium. Almost across the board, it makes all the MG symptoms worse. There are also many, many things that SOME myasthenics have no problem with, while others may go into crisis. For example, most people with MG cannot take the antibiotic Cipro. I, on the other hand, can take it with no problem. MOST myasthenics love Levaquin, a fairly new antibiotic. I took it for three days and almost ended up in the hospital. Doug had to half carry me down the hall, and push me up into my hospital bed (this was when the hospital bed was next to our bed in the bedroom. We could then fall asleep holding hands, even though we couldn't sleep in the same bed yet. : )

One of these questionable things is the flu shot. My very first GOOD neurologist (yes, I must distiguish because I had several that were HORRIBLE before him, but that's another post) told me to never get a flu shot. I should have left well enough alone. EVERYONE kept asking me about the darn flu shot so I thought I'd ask my current neurologist. He is fantastic, knowledgable, and the head of the neuromuscular clinic at the University of Michigan. Although I am partial to my first good neurologist, Dr. Moretti, Dr. Teener comes in a very close second. So I ask, and he says the benefits are sure to outweigh the consequences....I would do it if I were you.

Let's just say he's slipped a little on my "Favorite Doc" list.

I have spent the last 4 days feeling like I was in a vise grip. My whole body. Not just pain, but pressure. The joints in my pinkie toe hurt. I didn't even know I HAD joints in the crooked little booger. If I took a deep breath, I felt like an elephant was sitting on my chest and my lungs were full of razor blades. I had a slight fever. I had a headache that was ALMOST a migraine. I was SO weak. Scary weak. The only thing I really wanted to eat was popsicles. (God bless my husband for taking Jacob to the store, on his own, while I slept.) I took 2 naps a day. For those of you know know me well, I can't sleep during the day. I have to pee every 10 seconds. I didn't get all snotty and sneezy, but I was achy and coughy, and of course, razor-bladey. (Dopey and Grumpy probably applied too!)

It's now Sunday, 5PM, and I only had to take one nap today! Wait...what is that? I hear soft strains of the Hallelujah chorus!! Most of my aches are gone, now I just have to not over-do it.

Anywho. Next time someone asks me if I want a flu shot, I hope they are wearing protective gear.

Friday, October 17, 2008

Joe the Plumber and other news

Okay. I have to say this poor man inadvertently became the forefront of the most historical election in history. On one hand, it was hysterical, on the other, annoying. I think Joe said it best..."Get back to the issues!" The poor man's street was littered with news vans and trailers... A superstar overnight because of one handshake...and he's not even voting for Obama! (Good man, that Joe).

I have to say McCain kicked his butt in the debate on Wednesday. It was fantastic. I also have to say that Obama's association with Bill Ayers is downright frightening! In my opinion, he totally failed to explain the relationship. Then you add the TWENTY YEAR relationship with the crazy Chicago pastor, the mob dude...and we want this guy running the most powerful country in the world??? With a whole 143 days of experience?? No thanks!! Seems that he has a bit of a judgement issue. McCain isn't perfect, for sure, but at least we don't have to worry about his association with terrorists, foreign or domestic!

My biggest admiration of McCain comes from the fact that for FIVE AND A HALF YEARS, he was TORTURED. Daily. Almost every bone in his body was broken. Yet he endured, and didn't say ONE word to the enemy. He didn't leave when he COULD have because he wouldn't leave his men behind. As he was being dragged, beaten and bloodied, back to his cell, he would wink and smile at Bob, the guy next to him. Now THAT'S love of country. THAT'S honor. The man can't turn his neck all the way. He can't lift his arms more than halfway up. He can't type, or use a regular pen. He's probably in pain to this day. And all because he fought for his country. He IS a hero.

Another thing that speaks volumes to me is that during the time when Congress was trying to put something together to help this country bail out of it's financial nightmare, he was willing to abandon his campaign for the good of the people. Obama wouldn't even postpone the debate in the face of immediate crisis. Like I said, McCain's certainly not perfect (I'm a wee bit concerned about the whole health care thing...) but we know where his priorities lie.

On the home front: I feel like crap. Have you ever felt like an elephant parked on your head, neck and chest, only to get up after a while and use his trunk to razor blade your lungs? No? Well, I can tell you it's not a lot of fun. If I don't breathe too deep, touch the trach, move my neck, cough, laugh, or talk too loud, I'm just fine. : \

I did get a flu shot for the first time this past Wednesday, but I don't think it's a reaction to that, because I don't have a fever...I had a few sniffles on Wednesday but I thought it was allergies.

I got some beautiful flowers yesterday from our good friends Kim and Jason...it was two weeks yesterday that my dear Linda died. It's still such a shock, as crazy as that sounds. It's like, I can't REALLY believe I'll never see her again! (This side of heaven, that it is.) At least 3 or 4 times a day, I'm like, Oh, I have to call Linda and tell her...or Oh, Linda would LOVE that...or, Oh my GOSH I can't believe such and such happened on this show we used to watch together. It's like you lose a hand... You can acknowledge the loss, but then you still have to learn how to live without that part of you. And that takes time. Some folks think that because she was fighting cancer for 11 months I should have been more prepared. But the human spirit is an ineffaceable thing: Hope lingers. The fight just doesn't go out of you until the bitter end.

I do know that she is perfect now, in heaven, dancing and singing and just loving being face to face with her Creator. I envy her that. But I mourn for myself. I mourn for her family. This planet is just a little less beautiful because her spirit has left it.

Tuesday, October 14, 2008

Insurance

OH, it's such a love-hate relationship!!!

Normally doctors file with insurance on your behalf. However, there are times when you're on your own. When you deal with many doctors and hospitals and insurance stuff, you get to be a pro. When anyone asks what I do, (aside from being a SAHM) I tell them I am a professional medical patient.

You know those ads for medical transcription and bill coding? I could do it in my sleep. I can read doctor's handwriting. I know the right code for billing. And God help you if you have the wrong code. I'm fighting a bill since MAY that has the wrong billing code. I went to a dietician for diabetic education on cholesterol, which is covered 100% by insurance. The billing code was submitted as nutritional counseling, which is NOT covered by the insurance company, to the tune of $118.00. Same amount of time, same person, same service, WRONG CODE.

So I call the billing department. They can't change it without authorization from the person who put the wrong billing code in the first place (the dietician). So I call him. Yup, no problem he'll change it.

That was the first month.

Second month I get another bill. Called said dietician again. Left a voice mail, AND an e-mail. He forwards my e-mail to some other guy, copying me in. Doesn't actually reply to me. A-hem.

Nothing happens.

Third month I get ANOTHER bill, this one telling me I need to make arrangements or I will be receiving a call from collections. {Steam beginning to trickle from ears.}

SO. I backtrack to the original doctor who told me to go to this person in the first place. I e-mail her (the diabetic specialist), and ask her to call either the dietician or the billing people and give them the right freakin' code. I also e-mailed the billing department to tell them that I am NOT paying this bill, in part OR in full, because it was coded wrong (not my problem) and my insurance will cover it once they straighten out this mess.

As a person who deals with appointment after appointment, and as a person for whom stress exacerbates MG symptoms, I DO NOT NEED THIS!!!

I'm VERY thankful that I have insurance. I am very that it covers as much as it does. Otherwise, I'd be in the poorhouse. When it's right, it's fantastic. When it's bad, it's UGLY bad. Can I get an Amen?!?

I also just had to file a claim with the insurance company (this is what the docs normally do) for the new trach I got after I had my surgery. I had to get this piece of paper from the doctor, that piece of paper from the manufacturer, file this paper here, and that paper there. I filled out this form, and dotted that "i", crossed this "t", gave them my social security number, blood type, and promise of a second born child, should I ever have one.

And it still won't be enough. They will send their beautiful form letter, telling me I need to jump through THIS hoop, not THAT one, and that IF I stand on my head with a pink tutu on, AND if I walk backwards on my hands 3/4 of a mile, they MIGHT cover about a third of what I actually paid.

So I guess there's only one thing left to say: God Bless capitalism, and God Bless the USA.

Monday, October 13, 2008

Dead Roosters and Other Happenings

I TOLD him it would happen.

As soon as we knew that Henrietta was actually Henry, I said he had to go.

We got chickens this year around Easter. I love them. I love the eggs. We SPECIFICALLY picked out all girls. Or so we thought!

Growing up in the city, animals were pets. Period. So I'm learning about this country life, and the fact that you can actually HAVE an animal, NOT have it be a pet, and EAT it if you want. Whoa. We have thus started small, with chickens. They are so funny to watch...they run around the yard and chase birds.

I only named 2 of them, so I wouldn't get attached. We had 20 all together, but one died about 2 days after we got it. Yes, I bawled like a baby. I made Doug bury it.

Anywho...I digress. Henrietta, one beautiful bird that I named, started crowing one day. Well, crap. That meant Henrietta was really Henry, and we had to decide what to do. I wanted to find a home for Henry right away, although if you've never seen a rooster crow up close and personal it's quite entertaining. It appears as if, at the end of the cock-a-doodle-doo, that Henry's eyeballs were about to pop out from the strain. I didn't realize roosters could have expressive faces. HYSTERICAL. I laughed so hard I almost peed.

Then, when Doug's back was at it's worst, I was going out in the morning to let the chickens out. Day One: uneventful. Day Two: the attack. I opened the chicken door on the near side first. Mistake. By the time I opened the far door, and walked back to the gate, Henry attacked. I had shorts on. He charged and pecked my leg. I turned and punted. Even though his wings were clipped, Henry flew.

I told Doug, if he ONCE goes after Jacob, I will kill him myself.

Well, Saturday It Happened. Doug had the gate open, and the chickens were milling about, and I felt very proud of my fowl ownership and newly acquired egg-collecting skills. Then, I saw that Henry was out. I placed myslef in between Jacob and Henry, ready to go on the offense. Somehow, Henry skirted me while Jacob took off running, and Henry flew right into him, pecked his nose, and knocked him down.

Now, I am NOT a proponent of cruelty to animals. It was purely the Mama Bear in me. I kicked that rooster harder than I thought I could. He was pretty tough though...he went down and immediately got up for more.

So Doug came out and I said, "Get your gun."

He didn't listen, so I said, "I'm serious."

He said, "Um, why?"

I said, "Because I'm going to shoot Henry."

Something about my choice or words, the half crazed glare in my eyes, or maybe the gravel in my voice and the screaming child in my arms had something to do with it. But the man said nothing, turned back to the house, and got the gun. I wanted to do it, but apparently something about my lunatic state prevented my husband from giving me a loaded firearm. So, he did the deed.

We started plucking, but he didn't even have enough meat on him to bother. He was all beak and feathers. I asked Doug if he wanted another feather pillow, but he passed. So we buried Henry too.

The other major event Saturday was that I actually got my trach in all by myself. I couldn't beleive it. Last year at this time I wouldn't let anyone but the doctor TOUCH it, and swore I'd pass out if I ever had to do it. It's amazing what you CAN do if you have to. This was a MAJOR event for me, but reading this back, it really pales in comparison to the rooster. {Sigh.}

Have a good one!

Thursday, October 9, 2008

Now what?

Oy vey.

First, I must thank my dear friend Joanna for 1. bringing dinner over last night (it was delicious!!) and 2. helping me get my "new look" on the blog. Do you like it?? I was so geeked about it I just stared at it for like 10 minutes. Of course the gorgeous picture of my little one helped, too! So thank you, Joanna, for being there for me...even when I KNOW you were so tired from your long day!!

Ya know, God has SO shown me the last few weeks that I don't HAVE to have the "security" of a church, the four walls, etc., to have Him take care of me by providing FANTASTIC friends. Friends that REALLY care, who will help me no questions asked. (Except, "what can I do??") Thank you ladies...I love you all!!!

My husband, the strong, amazing, Davy Crockett/McGuyver wrecked his back last week. Actually his back and hip. He was clearing sandbags from his workplace (it almost flooded a few weeks ago when we had tons of rain). His hip came out of the socket and wrenched his back as well. He has gone to the chiropractor every day...was diagnosed with a sprained hip. Nice. However, his chiro. is AMAZING. He came in on Saturday AND Sunday to give Doug a treatment...God Bless You Dr. Lou!!!

Anyway...thank God I had the surgery to enlarge the trach, because I do feel better, and I've had to do more around here...Doug has been in so much pain...it's awful. He's doing better, but he's still got a ways to go. And of course, his work-a-holic nature is FREAKING out because he can't chop wood and take air conditioners out and leap tall buildings in a single bound.

Well, if you're reading this honey, you're still Superman to me.

Tuesday, October 7, 2008

Grief

There are all kinds of grieving. When you're diagnosed with a chronic illness, you grieve the life you have to leave behind. When you are forced to quit a job because of your health, you grieve the loss of your job. You may grieve certain relationships who can't handle a diagnosis for which there is no cure. And then there is the loss of a loved one. That grief is soul-stripping. The rip-your-heart-out kind of grief that you wouldn't wish on your worst enemy.

My best friend Linda was diagnosed with Stage IV metastatic endometrial cancer on November 1, 2007. After a valiant fight of 11 months and 1 day, Linda went to be with Jesus. I got to see her the day before she died, at Faith Hospice. She was in and out, mostly out, yet there was still enough "Linda" there to recognize. I know that she knew who I was, knew that I was there, and knew that I loved her. I held her hand and wiped her brow, and begged God to bring her home. I wrote her a letter a few months ago and told her that even though I was still holding out for a miracle, I didn't want to leave anything left unsaid. I told her exactly how much she meant to me, and how she touched my life.

Linda was the kind of friend that you could wake up in the middle of the night if something horrible happened. She was the kind of friend you could depend on, 24/7, 365. She was LOYAL. We had one fight in the entire 14 years of our friendship. She was so quick to forgive me for being overbearing and way too into her business. She had a quiet strength and determination that many people underestimated. Linda loved deeply. She didn't make friends quickly, but when you became her friend, you were her friend for life. She was a friend worth fighting for.

Linda's favorite verse was Zephaniah 3:17; "The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." I remember the day she found this verse. I walked into her apartment and she showed it to me first thing. She had written it on a piece of paper and put it on her end table. That God, the Maker of Heaven and Earth, would rejoice over her with singing made Linda almost giddy. I don't think she realized how many people rejoiced over her.

So to my dear, precious Linda: I will love you always, I will forget you never. You have indelibly changed my life. While my heart is broken, my spirit is soaring because I know that you are now whole, healthy, happy, and pain-free. There are no tears beyond Heaven's gate. There is no more night. There is no cancer. To the Best Friend a person could want...a sister, really. I miss you already.