Thursday, January 29, 2009

This Broken World

I don't know about you, but I am just SO ready for Jesus to come back. Anytime you're ready, Lord. People ask, "Don't you want to see your son grow up and have a wonderful life and have grandbabies?" Gee, if it's that or heaven? Nope, I don't really care if I have grandbabies if I can be in the presence of Almighty God with no more night, no more crying or pain, or sickness or loss.

Within the last 24 hours I have received news from the Phillipines that things are getting worse there instead of better as far as the flooding, landslides, and spread of disease. And this isn't even monsoon season yet. We sent some money, which is definitely helping, and for which Pastor Alex and his people are extremely grateful. It just feels so awful being so many thousands of miles away, knowing you have MORE than enough to help hundreds of the poorest of the poor, and yet short of flying there (which would probably kill me) I just pray. I shouldn't say JUST, because it is the most powerful thing to do, but most of you know what I mean. I just feel so helpless sometimes.

Then this morning I learn that a very dear, old friend lost her baby yesterday. She was at four months, and now has to go through a procedure to remove the baby from her womb. This is her third miscarriage, and she is devastated. She has had a really tough time getting pregnant...they did in vitro like 5 times, and then after they quit all that she got pregnant on her own, and has a beautiful little girl. This pregnancy was also a surprise, and she just found out about 6 weeks ago. Her husband is also struggling greatly, and they have to figure out a way to tell their 2 1/2 year old baby girl that she's not going to be a big sister.

WHY is ping-ponging through my head. Why would God allow such devastation to some of the poorest people on the planet? They already had nothing. Now they have less than nothing.

Why would God allow my friend to even get pregnant only to lose the baby and have to go through a horrible process to remove the baby?

Why did my best friend on the planet have to suffer and die from cancer at age 40?

I may NEVER know the answers to these questions. Not until I get to heaven, and then, honestly, I don't think I will care. I will just be so relieved to be away from all the hurt and suffering of this broken, crippled world.

The hope I have is this: God's Word says that ALL things WORK together for GOOD for those who love Him and keep his commandements. To know that the God of the Universe is WORKING for MY good, even though it seems as if there is nothing but horror, pain and devastation. He has a plan, my friends. And his thoughts are higher than my thoughts, and His ways are better than my ways.

I do not feel especially optimistic right now. But I know if I do not have hope, if I cannot cling to something I know to be True and Right, I will not survive. God is the only One who has kept me going through 8 years of chronic illness. Let me tell you, it would have been SO much easier for me to just lay down and die. But there is something that God has put in the human spirit that raises up through the most dire of circumstances and says, I WILL SURVIVE.

"I WILL SURVIVE!!"

It's the flower that pushes through the concrete because it must bloom.

It's the parent who refuses to give up hope on their rebellious child because love is stronger than despair.

It's the 2 pound baby, born way too soon, that fights for every breath, and survives, and thrives, and lives to be old and gray.

It's the broken heart of the widow, that is carefully sewn together by the hand of God Himself.

It's the quiet strength of a best friend who, even though she lost the war, fought the good fight.

So if you're broken, if you're ill, if you're suffering, BELIEVE. I know you don't want to. I don't want to sometimes. But I'm telling you from experience it's the only thing that will keep you going.

Push through that concrete...fight for that breath. It WILL be worth it.

Tuesday, January 27, 2009

Ups and Downs

"Ya take the good, ya take the bad, ya take it all and then you have the facts of life."

There is something so brutal and unfair about this disease. I have been feeling so strong... obviously that is the UP! However, I have been doing so much more, and actually ENJOYING some things, that now my hands and arms are suffering for it. Weak, weak, weak! My grip is really bad right now. It's worse than when just my brain is going 90,000 miles an hour. Now my body wants to do the same...the spirit is ready to fly....and the body just takes a poop. FRUSTRATING!!!!

I'm not really complaining (I'm telling you this because you can't hear the tone of voice since I'm not speaking...) I'm just venting my frustration. It's such a mindbend, ya know? One day you overdo it, so you expect to feel like poo. Then for a while you're feeling strong...and even after 8 stupid years you forget that you have limitations, that you're NOT going to feel like this for ever, that "normal" just isn't going to happen. It's like maybe THIS time will be different, and the symptoms just won't come back!

It's so hard not to get angry. It's so hard to keep disappointment at bay. It's so hard not to be lulled into "maybe it's a remission", and then BAM the symptoms come back. It's just irritating. I've NEVER been a "fly-by-the-seat-of-my-pants, go-with-the-flow" kind of girl. Structure and planning. That's me. I don't like change. At all. So to constantly be in limbo....one day this, the next day that....ARGH!

And then there's Jacob. Try explaining to a 2 year old (albeit a brilliant 2 year old! : ) why Mommy can do something one day, and not the next. He gets upset, I get upset, and so it goes. When I feel good, I go flat out. I go and go and do and do until I can go and do no more. I never know when I'll feel good again, so I take the fullest advantage of what I have.

I used to schedule things, then not doing anything for days ahead of time so that I would make sure and feel good for that day. Doesn't happen. Anything can make this stupid disease worse anytime. Not getting a good night's sleep. Fighting off a cold. Stress. (Which there's virtually NONE of, raising a 2 year old!) I could rest all week, and still miss the scheduled event. So now, I schedule things, but if I feel fantastic the day before, I go and do, and if I still feel good the next day, so be it. If not, oh well. At least I didn't blow my good day.

It's like waking up every morning with a bunch of loose change in your pocket. You never know how much you're going to wake up with. But what you have is what you have, and when it's gone, it's gone. That's like strength and energy when you have MG. You wake up with just so much, and when it's gone, you're done.

Anyway. Thanks for listening.

Sunday, January 25, 2009

Ya Learn Something New Every Day

So Friday I go to get some lab work done, and to get my bone density scan. Just went to Allegan General because it's so close. I've gotten stuff done there before (bloodwork, mammogram, that kind of thing,) and lived to tell, so I didn't think this would be any different.

I had an appointment for the bone density scan at 3:00PM. I got there a little early to get the bloodwork done. Got called back, little girlie does the blood draw, does a fantastic job. Don't feel a thing. Of course, I'm used to needles the size of fork tines when it comes to pheresis, so the little bitty things they use usually don't hurt. She puts the little cotton thingy on there, tapes it, and I'm off to the waiting room for radiology.

I start my crossword puzzle, and hear my name.

Me: I'm here...coming...

Radiologist: KERRI?!?!?!?!

Me: peeking around the corner "I'm coming...." (had to gather my coat (for it was 97 degrees in there), my purse, my suction machine, etc.)

Radiologist: tap, tap, tapping of the foot

Me: following radiologist, glancing down at arm halfway down the hall: "Oh sh!#." (Which I immediately felt bad for...it just slipped right out!)

Blood had soaked my shirtsleeve and was running down my arm. Now before I continue, let me tell you that normally the sight of my own blood makes me either faint or throw up.

Little Miss Radiologist (who was about 95 pounds soaking wet and about 4'10") practically throws me into a strategically placed wheelchair in the hallway and thrusts my arm up, fist to my shoulder.

Radiologist: Don't move!

Me: Wow, this has never happened before (stangely calm)

Radioloist lady flies around, finds a towel. "Okay," she barked. "You move your arm for ONE SECOND, I'll put the towel in, and you IMMEDIATELY put your fist back up." For a minute there I thought we were disarming a bomb or something. I move my arm, she shoves a rolled up towel in there and jams my fist back up into my shoulder. (Whew, that was close, I wanted to say).

I just kind of looked at her and thought of offering her an Ativan, but reconsidered, thinking it may affect her future work that day.

She continues to fly around looking for gloves, a cotton ball and tape. The way she was acting I thought she might call surgery, or at least the guy who does stitches. It IS kind of amazing how much blood can come out of such a teeny, tiny hole! She just kept asking me if I was okay, if I felt okay. I'm like, I'M fine...you??

Me: "I really can't believe this. This has never happened before." Okay, so maybe I wasn't quite as calm as I thought, because I kept repeating myself. Although I was much calmer than she was...I knew one of us had to keep it together!

Radiologist lady, as if she had just saved the world: Good thing I knew what to do!

So then she says: Just pour peroxide on that blood when you get home and wash it and it will come right out. Well, I thought, she knows what to do!! : ) Seriously it did work!! I thought my shirt would be ruined; you can't even tell I almost bled out on it.

So then I go with her to get the bone density scan. My mom had one done, and they just moved this box thingy over her body while she sat in a dentist-like chair. No problem.

I get to this tiny room, with a tiny flat gurney looking thing, and a big STATIONARY machine. I'm like, oh THIS will be fun. I cannot lay flat and breathe well because of the MG. I have permanent weakness to my diaphragm and supporting chest wall muscles. So I tell the lady I can't breathe when I lay flat.

Radio. lady: It will only ten 10 minutes.

Me: Can YOU hold your breath for 10 minutes?

Radio. lady: blank stare.

Me: I'll do my best.

So I lay down, start gasping for air, and THEN I have to put my feet up on this huge block which is shoved up against (under) my knees. This makes me feel like not only am I lying flat, I'm lying upside down. The wheezing increases.

Radio. lady: This will just take a minute.

Pause. Wheez.

Radio. lady: The machine doesn't like that you're not perfectly straight on the bed. Move this way.

Pause. Wheez. Gasp. Wheez. Gasp.

The machine starts moving down. After about 5 minutes:

Radio lady: Oh dear.

Me: Oh crap.

Radio. lady (I really should have gotten her name): The machine didn't like that pass, we'll have to do it again.

I'm like, you need a machine with a better attitude!!

Finally, with much ado, we get done...after about 15 minutes of lying flat. My oxygen level is probably at about 50 right now. I sit up and the room is spinning and I suck in deep lungfuls of air. Everything starts coming back into focus.

Me: That it?

Radio. lady: Yup. Don't forget about the peroxide on those blood stains. Never thought you'd learn something new today did you??

I thought, Oh, lady. If you only knew.

Wednesday, January 21, 2009

The Epitome of Irony

Well, well. I have to say (in the words of an old friend) that I was under a "self-imposed media blackout" yesterday for all the "festivities." I literally could not watch without feeling ill. Not that I was so upset that Obama won (even though I am), not that I think many people voted for him for the wrong reasons (which I do), not that I think this man could be taking this country in a direction that it should not go in (which I do), but because HE IS JUST A MAN!

In the flashes I saw on TV (Doug had the news on at supper) these people were in a frenzy over this man of flesh and bone that they think is going to save the world. Well let me clarify: WE HAVE ONE SAVIOR, JESUS CHRIST, SON OF GOD, MAKER OF HEAVEN AND EARTH. I saw what could only be described as worship, and it made me want to vomit. How terrifying that so many millions of people have their hopes and dreams and futures hanging over the shoulders of one human, one man, whom they think will solve all their problems. God must simply weep over his fallen creation.

The irony of this indulgent celebration is that it had a $150 MILLION pricetag. Now excuse me, but are we NOT in the most dire of economic circumstances since the Depression? You know, the GREAT Depression? The inaguarual committee raised $41 million. That leaves $109 MILLION dollars to be paid by the tax payers of this country. That means me. Now seriously, how much does it need to cost to put your hand on a Bible and say I do???? I realize compared to the trillions of dollars already spent and those going to be spent, $109 million may be a drop in the bucket. But if you're going to throw money down the toilet, mine is open and available! How many hungry children are there in the United States alone? How many people don't have enough money to pay their electric bill and still feed their kids? How many people will go without heat? Without a winter coat? Without a roof over their heads?

But the first glimpse of the Obama reign demonstrates the squandering of so much money that most of the above problems could have been solved. And yet he wants to share the wealth. If that isn't irony, I don't know what is.

God Help us All.

Monday, January 19, 2009

Some of my "Joys"

Oh, how I love dial-up. I cannot sing its praises enough. Actually, I can't sing its praises at ALL. (Technically I can't even sing anymore, what with the trach and all, but forgive me, I digress).

I have a laptop, which I love. But I do not love the little mouse thingy in the square below the keyboard. Don't like it at all. So I have an external mouse. Well, it took a poop. A mouse poop. (ba ha) So I'm left to shuffle my fingers around and try to find the cursor and get it where I want it to go. Patience is NOT one of my forte's.

So I'm trying to figure out this new website that I'm going to be writing on (Take Root and Write, part of Christian Women Take Root). Every tutorial is a video. Well, God Bless Dial-Up, I can't download videos. Well, I could, but I can't view them, so what's the point? I've spent hours blindly foraging through these two new websites trying to figure out which end is up...and I"m clueless. I"m supposed to make my own text box and moderate a group and post and do all this on the one website before I write my column on the other one. I'm so confused. Calgon take me away!!

To add to my joy, last night I was painting with Jacob. Jacob was painting himself, his chair, the table, his clothes, me, and oh, yeah, he got a little on the paper. Well, I've had a gnarly cough pretty much since I've had the bigger trach, and as I was having a massive coughing fit (without covering the trach because my hands were full of paint) there it went flying out of my neck. Luckily, my cat-like reflexes kicked in and I actually caught the thing, paint and all. I started my phht phhht phhht thing trying to get Doug's attention, as I can't talk without the trach in.

He must have heard the desperation in my PHHHHT and came running. I just freakishly gestured to my hand, my trach, the gaping hole in my neck, and our paint-covered child. (All at once without talking....let's see YOU do that!)

So I go to the sink, clean it off, go into the bathroom (mirror) and pop it back in, and cough and hack and gag and all that good stuff. Let's just say painting time was SO over. So I get Jacob cleaned up, put the TV on, go into the kitchen by Doug and start to bawl.

Doug being the compassionate nurturer that he is said, "You're okay, you got it back in, you knew how to do it, Jacob's fine, all you're doing now is wasting body fluids."

Did I tell you the guy is like McGuyver? Well, what he has in spades in that category, he lacks a bit in the comforting department. (He admitted as much that night when we went to bed.)

Honey, next time just hug me, say it's okay, and rub my hair or neck or back or something. I think we're good for next time.

Friday, January 16, 2009

Update from the Philippines

Please keep praying. The last new release from the area stated there are 20 dead and 300,000 displaced. And this is NOT monsoon season.

People are sleeping in open air, covered basketball courts made of cement. Some have 2 walls, some have none. There is a huge concern about older folks sleeping on the cold cement, and no one has mosquito nets, so malaria is a huge threat.

Please continue to pray that the waters will recede, and that enough people send money to help them to get everyone a mosquito net, at the very least. They are also in need of medical supplies, bandages, school supplies, you name it, they could use it. If you would like more information, please leave a comment or e-mail me.

Thursday, January 15, 2009

Things I’m Learning as a Mom

Things I’m Learning as a Mom

* Two year old boys NEVER run out of energy.

* Children really do inherit both good AND bad traits of their parents. Well, of their father, anyway. : )

* Using an electric clippers on a squirmy two year old boy will inevitably lead to bald spots.

* I never thought I’d get sick of hearing “Mommy.”

* You CAN spend TOO much time with your child.

* Two year old boys are prone to do the exact opposite of what you ask.

* When Jacob grabs my face in his little hands and says, “I love you Mommy” the whole world melts away.

* Running in circles around Mommy while she is trying to do the dishes is GREAT fun.

* Watching my sleeping child evokes emotion deeper than the deepest ocean abyss.

* I don’t deserve such an amazing gift as Jacob.

* I understand more about how God loves me.

* I didn’t realize the theme song of Wow Wow Wubbzy would keep me awake in the middle of the night.

* I never knew how hard it was to be a good mom.

* I have a whole new and higher respect for my mom.

* I would protect my child unto death. (Ask me sometime about Henry the rooster if you don’t believe me!)

* Two year old boys like more than anything to bang, jump, climb, make loud noises, and scare their Mommy’s have to death with their stunts.

* I never knew how much one little boy could change my life. Mommy loves you Jacob.

Wednesday, January 14, 2009

URGENT PRAYER NEEDED

Please, PLEASE keep praying for Pastor Alex and his family and the people of the Phillippines. They are having terrible floods, and it is predicted to keep raining through February. Half of the city where they live is under water, and 10's of thousands of people are being affected. Many have to be rescued by the military. These people already have nothing, but what little they did is gone. All of the school supplies they had are damaged beyond recovery. Pastor Alex and his family had raw sewage running through his home, church and school. They are also dealing with landslides due to all the water.

The Bible says that where two or three are gathered together in prayer, He is in the midst of them. I ask that you all join in prayer with me is asking God to stop the rain (which is predicted to continue through February), to recede the waters as he did with the River Jordan. He is the Master of the wind and the waves. Please also ask for supernatural strength for Pastor Alex so he can be the light the Filipino people need during the devastating time.

The city (Cagayan de Oro) has been declared a disaster area.

If anyone would like to help financially, please leave a comment and I will get you to the person with the info. She has a paypal account set up, and will wire money so we can get it to them asap.

Thanks.

Tuesday, January 13, 2009

I Thought Only North Dakota Got Below Zero

Good grief. It is cold. And it is snowing! A lot. Well aren't I profound.

The blurring snow flying sideways has fogged my brain. It's only half way through January, and the walls are already closing in. Jacob was in rare form this morning. He woke up on the WRONG side of the crib, for sure! He was so cranky he didn't know which end was up. We finally got downstairs (I had to half drag him!) and he was just beside himself. REE-dic-ulous.
He is usually a teeny bit cranky in the morning, but this was beyond cranky. This was downright ugly. (It was kinda cute though, because his little eyes are always puffy when he first wakes up.)

Then he took a 20 minute nap this afternoon. Why bother. We played play-doh. We read Diego. We colored pictures. We did puzzles. We looked at cards. We looked at animal pictures. We caught pretend butterflies and transferred them from the canning shelf in the kitchen to Jacob's bus in the dining room. Naturally.

He is hysterical though....last night he said, "That's okay, Mommy, I know what I will do." I'm like, who are you and where is my two year old??? And now he greet us "Howdy Partner Mommy! Howdy Partner Daddy!" He cracks me up.

Anywho...I really can't believe we're going to have ACTUAL temperatures below zero. That's like Fargo territory. I can't even see my road anymore. And it's not dark yet. Doug got home late from work and had to immediately go out and plow. I wonder if my chickens are still alive?!?! We do have a heater in there...but still. Brrrrr!!! Maybe we'll have frozen chicken for dinner! Just kidding.

Well, try to stay warm!!

Friday, January 9, 2009

Insurance Wars

Good grief.

I've always felt that the insurance companies were a mixed blessing. They're wonderful if you don't need them too much! But heaven forbid you actually USE the services you're PAYING to be insured for. I mentioned in a previous post that my husband's insurance company, Blue Cross Blue Shield, is forcing me to get Medicare because I'm on disability. Basically, they are sick of paying my medical bills, and have found a loophole through which to shove me. Gee, let's punish the sick people even more!!!

I have been checking into this national insurance of ours, and let me tell you, it STINKS. To really know that this is how we "take care of" our elderly and infirm is nothing short of stupefying. This country should be ashamed. I feel horrible that I had no idea what people on Medicare, who are the weak, the mentally or emotionally disabled, the elderly, have to deal with. I've been trying to call the local Social Security Office in Kalamazoo. All I get is a recording saying that all the lines are busy and I should hang up and call again. I have probably called 500 times in the past week, never to get through. And their website is a joke. It's just a big circle with labyrinthian answers.

For me it's not even as bad as it is for older folks, or folks without any other supplemental insurance. Take my parents for example: My mom takes one medication that costs $3700.00 a month. She has acromegaly, a very rare disease in which the pituitary gland never stops making growth hormone. Without the medication she would likely go blind and die from an enlarged heart. But since it's expensive, my parents have to pay 25% of the cost (with Medicate part D which is $61.00 a month for each of them). So that's $986.00 A MONTH for one prescription. That doesn't take into account the "regular" insurance, which costs each of my parents $97.00 a month ( as it will me). Then, after $2700.0o of coverage, the next $4035.00 have to be paid by my parents, and then everything is paid 100%. Well they'll be bankrupt by then! (My dad is one probably 8 or 9 medications).

PLEASE tell me what senior citizen, mentally handicapped, emotionally impaired, or disabled person can afford $17031.00 a year for Medicare insurance with ONE prescription????? A lot of folks on Social Security don't even MAKE that much! I'm on 7 prescription drugs. Thank the Lord, the BCBS supplemental insurance will cover prescriptions. Otherwise I don't know what I'd do. Without my CellCept, my quality of life is not half what it is now. I have no idea if Medicare will cover plasmapheresis either, or how much of it they will pay.

Oh, another absurd problem with Medicare coverage: they don't pay for preventative care. For diabetics, they pay for supplies, which is good, and they pay for hemoglobin A1C test twice a year. But they don't pay for an endocrinologist to follow you. It's ridiculous.

I did not vote for Obama, nor am I looking forward to living in a Socialist country, but if he can fix this inane medical system, kudos for him.

It's hard enough dealing with the everyday challenges of living with myasthenia gravis and raising a 2 year old...now I have to fight tooth and nail just to get medical coverage for a disease I am stuck with, but sure as heck didn't ask for. In this country, you can't afford to be sick, and many can't even afford to die. Unacceptable.

God Bless America.

Monday, January 5, 2009

When Did I Get So Old???

Or is it just that everyone younger than me is aging at a FAR more rapid rate and I have somehow been frozen in time? Yah.

I have been receiving copies of US Weekly, a magazine about celebrities...I didn't order it, but it just started coming in the mail with a bill. I'm like, no thanks. So I'm looking at these people in the magazine going, "Who is THAT?" Or I see the little red-headed girl that was on Full House when I was like 13, and she's like half-grown but all skinny and haggy looking at the ripe old age of what, 20? So sad to see these young, young kids half dressed, having babies, and living such a wild lifestyle. Crazy.

I've recently been gabbing on facebook, and many of my high school friends have children that are in their TEENS! (Maybe they would know who all these kids inthe magazines are!) And then I think, oh my GOSH, I'M going to be a FORTY year old with a FOUR year old in two years!

And then I think, why do I still FEEL like I'm 25 in my head? That's what's so wierd. I remember 3rd grade like it was yesterday, but it was THIRTY years ago. That is just NOT right. How is it possible that I remember THIRTY years ago? I remember when thirty wasn't just OLD, it was like, half DEAD. Now 80 is old!

Anywho...before my decrepit mind digress any further...age is just a number, right? RIGHT?!?!?

It has been super-fun (See how old I am? I use words like "super-fun!") to catch up with lots of school friends. I went to a Christian school where kindergarten through 9th grades were all in one building, and with few exceptions, I went to school with the same 30 kids for ten years. It became like extended family, really. Like having LOTS of brothers and sisters.

Having a birthday usually doesn't make me opine quite so much, but for some reason, this year it has. (Can't wait to see what turning 40 does to me!)

Lastly, and on a totally different note, dear friends who are missionaries in the Phillippines (they are a pastor and wife native to the country) are suffering from terrible flooding right now. It hit their city, and the Phillippino people are already so poor, and have nothing already...please keep them all in your prayers.

God Bless, and let's have a healthy, safe, BLESSED 2009!