Busy, Busy, Busy!

photo courtesy of The New Professional

 

I truly cannot believe how BUSY everyone is! I can't believe how much people take on. It's like the busiest, most exhausted person wins! But wins what? Lost relationships? An ulcer? No sleep?

I have to admit, I use to be a busy person. My illness slowed me way, way, WAY down. TOO "way down" if you ask me. But it really makes me treasure what's important. I guess if there's one thing I'm thankful for in regard to having a chronic illness is that I try not to take important things for granted. I ask myself.... Will this matter a year from now? What about 10 years from now? It may matter an HOUR from now, but does it have ANY lasting value?

Here's a big shocker, folks, hope you're sitting down.

It's not a competition.

If you get everything done on your list of 17 things to do today, but had no contact with a true friend, or helped no one, or didn't pass on a kindness to a stranger, then did today really matter?

I KNOW I can't be the only person on the planet who genuinely cares about people, and will make time for what's really important. But that's the key. You have to MAKE time. My theory is that if it's important enough, you'll find time for it. You find time to watch your favorite program. You find time to eat dinner. You find time to go shopping. You find time to read a good book. You find time to ______. And I'm still preaching to the choir, because there are many times that I could spend with God, that I choose to do something else...watch TV, read, etc. We just have to prioritize.

Some folks genuinely have busy lives because they ARE taking care of others; a sick friend, an elderly parent, a down-on-their-luck neighbor. And bravo to you! But don't forget that even in doing all these "Good Things" you can still be too busy.

In our world of immediate gratification, it is important to learn to slow down. I have had to by force. But it really has made me step back and see that so many of us are, or were, just like crazy little ants running around and going and going and going.....

So please. Take a minute to stop today. Stop and spend a few minutes in complete silence. Stop and spend a moment in prayer. Stop and just breathe! Stop and drop a card in the mail for a friend, or a shut-in at church. Stop, and ask your pastor what you can do to help. Everyone is “busy”.  However, if something is important enough, you WILL find time for it.


For everything there is a season, and a time for every matter under heaven:

² a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
³ a time to kill, and a time to heal;
a time to break down, and a time to build up;
⁴ a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
⁵ a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
⁶ a time to seek, and a time to lose;
a time to keep, and a time to cast away;
⁷ a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
⁸ a time to love, and a time to hate;
a time for war, and a time for peace.

Ecclesiastes 3:1-8 ESV

As IF MG Isn't Bad Enough

I don't feel like I can really go into detail, but I would like anyone who is able to please pray for me and my family.  Having this disease is brutal.  It's brutal on me, on my husband, on my son, on my marriage, on everything. 

Then you throw every day life in: squabbles and disagreements over child-rearing techniques, opinions, money, sex, you know, just the "stuff" of life that people argue about.

Add in extended family.....that's a whoooooole different post; one that I probably will never write....

And then just being a mom, housekeeper, cook, oh, and small business owner.

It is only by the grace of God that I am still vertical and functioning.  I have had to put up with so much on my own.....Horrible stressful decisions that are beyond difficult to make if you have someone to help you make them, let alone doing in all on my own.

I know the Lord is with me, and that's what keeps me alive.  But I really have some decisions coming up that are going to affect the rest of my life, and the lives of those immediately around me.  And I've given myself 30 days to pray before I make the decision.

I would appreciate anyone who would throw their proverbial "prayer hat" in the ring with me.

{Sigh}

Hey all.

I have not been in a good place the last several days.  Weeks, maybe?  Months?  Ever since the coughing-up-of-the-blood for a month, and pneumonia, all while trying to maintain my sanity while raising a very inquisitive, extremely bright, crazy active, exuberant-ALL-boy only child who thinks Mommy has nothing better to do than be his playmate.... 

I'm trying so hard to stay "upbeat."  I mean, I'm not trying to be fake... {please, those of you who know me know I don't do fake...not in my genetic code}.  I'm just trying really, really hard to count my blessings and stay focused on all the good things in my life. 

Can I just tell you what a challenge it's been?  UN-real. The only way that I could even BEGIN to manage everything I do is if I give up everything that I LOVE that doesn't necessarily impact Doug and Jacob....like my jewelry.  And my writing.  And my blog.  And facebook.  My social networking ability is my LIFELINE.  Literally.  There have been times when I have been "this close" to just throwing in the towel.  And it wasn't my husband or family that brought me out of the pit.  It was my friends on facebook and friends from my blog... people with whom I have bonded MORE than family. 

And I WILL. NOT. GIVE. THAT. UP.  I won't.

So I have to just soldier on and suck it up.  Not a perfect way to live, to be sure....but it's the only way I know how to survive right now.  Yup.  Definitely in survival mode. Just. Keep. Moving.

If I didn't think I'd have a breakdown, I'd beg to be committed! (Yeah, think on that one for a while...)

Another Day, Another Doctor

How I wish it was another dollar instead!  I can't seem to shake this stupid cough. So I'm off to the doctor this afternoon. I'm just not feeling the greatest, and I'm supposed to have 2 treatments this week.  I don't want to go.  I don't want to do it again without the port.  Last time sucked so bad.  Ninety minutes to place 2 lines.  Stab, stab, stab. Plus, before each treatment I have an appointment with a different doctor. Nice.

Anyway, you'll all be offering me some cheese to go with my whine in a moment, I'm sure.  I need carpal tunnel surgery.  My hands are so numb and painful in the morning....sometimes for hours. They hurt SO bad....and I sleep with wrist splints on.  I have forever.  But they don't help enough.  I've been diagnosed with it through an EMG (oh, those are SO fun!)...and I've tried the Cortisone shots....which I will NEVER do again.  Talk about pain. HOLY CRAP.  The shots themselves were brutal enough, but them for 24 hours I had the worst hand pain I've ever had in my life.  I cried all night.  It was HORRIBLE.

So I need surgery.  We've met our out of pocket max. for insurance this year, so it would be 100% covered if I can figure out how to get it done before Decemeber 1. 

Then, I still need the port, which will be covered as well.

Saturday I ran a few errands and had lunch with my friend Joanna, and I was just WALKING and hit my big toe with the heel of my other shoe, my cute, summer Birks that I bought in March or April that my feet are FINALLY not too swollen to wear, and the first time I wear them, I BARELY bumped it, and nearly ripped half my toenail off.  Started gushing blood, I'm in the bead store...good grief.  What else.

Could someone please just move in for about a month and manage my life for me?  I'm tired of doing it.  Ain't no letting up either.  Doug hasn't been feeling well for almost a month as well.  And getting him to the doctor is about as easy as getting a vegan to a pig roast.  So that just adds more to me.  Thank God for Auntie Shawn.  Jacob goes there twice a week.

Because I'm supposed to "live a stress-free life."  Um, yah.  Anyone who can show me how to REALISTICALLY do that.....I'll give you a million dollars.  As soon as my money tree starts blooming.

Stress Is Very, Very Bad

The worst thing for my chronic illness is stress.  Stress can be invisible, just like illness, unless you're not so good at hiding it (the stress response) like me.  When I'm stressed, pretty much everyone on the planet knows it.

So.  Here are just a few of the things that cause me stress that, in my humble opinion, could be avoided if other people would just do their jobs.

1.  I had a pulse ox walking test at my doctor's office on August 2nd.  Today is September 13. That's a month and 11 days since the test.  I am STILL waiting for them to fax the information to my pulmonologist and Airway Oxygen. I have called no less than 7 times.  I called the office manager this morning and left a message, and am waiting for a call back.  SEVEN TIMES.  Airway needs it for Medicare billing approval, and my pulmonologist needs it because my O2 sats are way too low.  I cannot think of a reason on this earth that would cause someone to NOT be able to neither fax the information requested NOR return any of my calls. Unless, of course, they have met with a terrible fate and lost all of their fingers, voice, and brain.  If I do not get the information faxed today, heads. will.  roll.

2.  On a totally separate matter, I had to listen to 1 minute and 47 seconds of "if you need this" option that I didn't need, "press one now" before I even got to be put on hold to speak to a human being.  Said human being finally got on the line, and was either drunk, asleep, ill, or all of the above, because I couldn't understand a word she said.  And she wasn't foreign.  In this economy, you'd THINK companies could find qualified people to answer their %$#!* phones.

3.  We went to the fair Sunday.  I hate the fair.  Dirt, rides you can hear falling apart as you walk by, crowds of people from the elite to the dregs of humanity...all I see are germs.  That's my superpower.  I see the germs on everything.  And it's not pretty. It makes me throw up a little in my mouth.  But since my son was in heaven for 8 hours (yes, 8, long, grueling hours) I tried not to hyperventilate.  I did take 2 canisters of foam antibacterial hand stuff, one bottle of gel antibacterial hand stuff, one package of antibacterial wipes, and one package of Clorox bleach on-the-go wipes.  And still, exactly on time, 48 hours later, Jacob is getting a cold.

4.  We have not had Blue Cross Blue Shield insurance since December 1, 2010.  Yes, that's almost a year ago.  Yet I STILL receive EOB's from them because Medicare forwards the claim to them instead of Priority, my new health insurance (since December 1, 2010).  I have called Medicare on several occasions and they swear it's been taken care of.  Obviously not.

5.  I have been trying to get my doc's office and my insurance to cooperate on getting a monthly calcium supplement like Boniva or Actonel.  I took Fosamax but stopped because of the dangerous side effects.  I have osteoporosis from Prednisone, and I haven't been taking anything for months now.  I'm at my wit's end.

6.  Then we have the every-day life stressors that everyone has to deal with:  finances, children, husbands....everything household related falls to me.  If it happens inside the four walls (unless it's a construction project) it's mine to deal with.  Sweet.

Invisible Illness affects every area of my life.  Every. Area.  So if I seem super stressed out or grumpy, or exhausted....I probably am, and with good reason.  I have been feeling SO much better since I've been getting treatments more often, and closer to home.  And I am very thankful for that.  I guess that's why I haven't been in the hospital from all this stress! 

And I'm very thankful for good friends who "get" me, who I don't have to pretend with... Because there's a lot of pretending that goes on with people who have chronic illness.  We get just as tired of it as our caretakers do.  And we can never escape it. 

Trying To Catch Up

My word.  If my brain was not securely encased in bone it would surely leap from my head from sheer frustration and overload.  It's like at any one time I'm trying to think of, organize, reflect, and orchestrate 25 different things.  Having 4 days of celebrating an only child's 5th birthday didn't help.

Saturday was the party at Grandma and Papa's house.  Sunday we chilled out here but let Jacob open his presents.  Monday Doug took the day off and we went fishing in South Haven. Didn't catch a thing, but checked out a few shops (didn't buy anything but fudge and fancy dog biscuits).  OH, and of course I found a bead store.  Then we stopped at the Dutch Farm Market (yummy), Jacob played on the playground, and was SUPPOSED to go to bed early.  But NOOOOOO, Daddy wanted to do fireworks.

So the NEXT day, at his kid party with 6 of his cousins, he was a mess.  A crying, whining, overly tired, overstimulated mess.  And I got to deal with it.  Thank GOD for Karen and Kerry. 

Even right now I've got like 10 blog posts running through my head.  Little Caesars didn't put our order in (I CALLED AHEAD so it would be READY!!) so Kerry had to wait, and Karen and I had to distract 7 crazy hungry children for 20 extra minutes.

I'm trying to up my page rank for my blog for google (something I didn't even know existed til recently) and I can't figure out what the heck I'm doing.  Computer programming is from the pit of hell.  I literally gave myself a migraine trying to read code and figure out what the %$#!& I was supposed to do with it.  I think I might have even broken out in hives.  Palpitations for sure.  Thankfully, God has blessed me with Kate, blog designer and programmer extraordinaire, who is helping me. (Her button 2711 Designs is on the side of my blog).

I've got pictures I want to post.

I've got a budget from hell I'm trying to figure out...property taxes are due...HUGE electric bill threw me all off schedule last month....I'm about to go insane....I'm trying to start/run/increase a business, and haven't had time or energy to do so.

I've got the usual doctors, HSA, health issues, prescriptions, appointments, etc to keep up on (no small task in and of itself), and a million other things running around my head like little mouse feet. Scurry, scurry, scurry.  I've got book reviews to do, a Bible study to finish, turkeys to corral, dogs to take care of, a child to homeschool, raise, teach right from wrong, make eat good food, etc., dinners to make, oh yeah, and then there's this thing called MG.

Ok.  I'm going to go now and try to figure out how to organize all of this stuff without losing what's left of my mind.  Thanks for reading!!!!

I Think It's Time for that Tequila

I swear, between Consumer's (who DID call to apologize, by the way, AND put it in writing that they made a mistake...mmmm-hmm) Verizon and Direct TV, I just want to do some tequlia shooters and run off to the mountains. But alas.....ain't happenin'.

Verizon has been "working" on my connection problems for over a week, and this is what they have come up with so far: I am between 2 cell towers, just a tiny bit closer to one than the other. From my past history (sounds way more interesting than what they mean) I've been pinging between the two towers. The one that I am closest to is over capacity (too many users) and they are working on upgrading it. They are planning on having it done by the END OF THE YEAR. Are you smoking crack out of your ever loving mind???? Deep breath...deep breath. Oh, yeah, I can't TAKE a deep breath!

Then there is Direct TV. We have been "new" customers (as in never tried them before) since August 27, and we have had no less than SEVEN service calls. I called LAST Wednesday for another one, because they still haven't solved the problem, and they said the FIRST available agent would be here a week from that Saturday, (which is this Saturday) between 4 and 8 PM. Oh. My. Flipping. Word. I was like, do you realize we've been customers for all of 3 weeks? You're telling me you have NO ONE until 11 days from now? NO ONE?????

Frankly, I don't believe you. But that doesn't matter, because you have all the power and control over my TV so ppphhtttt on you.

Then I had a doctor appt. today (good thing they called to remind me yesterday because I had no idea) and started bawling when he asked me how I was doing. Nice.

I'm going to go eat supper now. And have a drink or 3.

Comedy of Errors

So I just got done scrubbing the stick from flypaper from my neck, ear, and hair. Why, you ask? Because I was reaching for Jacob's butterfly cage, and forgot it was there. That's how I spent my first 30 minutes of "alone time" with Jacob and Doug out in the field chopping wood and collecting butterflies. Oh, dontcha just wish you could be me??


Here's kind of how the rest of the day went: (Remember that stress exacerbates my disease, and I've had arcing power lines for 4 1/2 days).


(This is like those TV dramas that show you the end of the program, then take you back to an earlier time and start over)....


Eight hours earlier...
At 8:30 this morning I called Consumer's for what I was determined to be the LAST time, and told them if they were not out here by noon I would be calling 9-1-1. They took a FOURTH work order, this being my SEVENTH call in FIVE days. They told mea truck had been dispatched. Yah. I've heard that one before.

OH….and my DIRECTV froze. AGAIN. So I called the repair guy who told me to call him directly if I had problems. We had problems all right. He had said he would be out between one and two.


Noon came and went…I even gave Consumer's an extra 10 minutes. No show. So, I called 9-1-1. Firemen from two different departments came out. Amazingly, a Consumer’s truck freed up within 35 minutes of the firemen’s request to come to my house and fix the arcing wires.

I was explaining to the firemen (oh my goodness they made me feel old. The first 2 here could definitely have been my sons! Even the 2nd lieutenant could have, probably.) They were all kind of like, okay lady, we’ll call Consumer’s for ya. THEN the wire popped three times in quick succession. They ran to the tree and looked for fire. I was like “MMMMMmmmmmmmmmm-Hm!” {You have to make sure you are sliding your head side to side from the neck only as you say this.}


They told me to shut my main breaker off until Consumer's came. All of the sudden I was like, CRAP! We have no power right now! I have to call off the DIRECTV repairman! So I called him again. Hopefully he will come tomrrow. We hav had NOTHIG but grief with this whole thing.

So Consumer’s came (about 35-40 minutes after the fire dept. called them) and fixed the popping and arcing. FINALLY. There originally were 3 wires, 2 of which were being compressed by the tree branches. They took those down, and replaced it with NEW wire, three strands twisted. By the time they actually started the "fix" it took about 25 minutes. Oh, I'm so glad I waited five days on pins and needles, on the verge of a panic attack waiting for this long, drawn out fix. RIGHT.


In the middle of all this, a gentleman who had stopped at our garage sale several times asking about a plastic children’s slide pulled into my driveway and came to the door. I was like, if this guy asks about the dang slide I’m going to kick him in the chops. This would be no small feat for the man was about 6' tall and looked like a very large linebacker. Nope. He wanted the plow truck. I had to call Doug at work. Again. He said fine, sell it for $x amount and keep the new engine. So Slide Man told me he’d be back in 30 minutes. That was over an hour ago. I had to dig up the keys and find the title to a truck we haven’t driven in 10 years. Nice.


I also had to call Apria this morning, because the new oxygen concentrator they brought me Thursday morning in exchange for the old one stopped working half way through the night. So not only am I dealing with all this garbage today, but it’s on poor quality sleep. Not enough oxygen. I just want to scream! But I don’t have the energy. (NO PUN INTENDED!)


Good thing Doug got home before the Slide Man turned Pickup Man came back, because I had gotten the wrong title out of the safe. See, I told you I didn't have enough oxygen last night!!


What a day. My nerves are so keyed up I could about puke. Give me a bottle of Oxygen, a fifth of Tequila and call me in the morning.

M'k. So Joanna and I were at McTalking time last night Woot! Woot! (Bible study at McDonalds). First of all, we will NEVER go on a Tuesday night again...it's like FAMILY night or something, and people come with all their hooligans and do crafts and let them run around like animals. Not much in a restaurant bugs me more than that. This one monster was LOUD. I mean walls-shaking-everyone-turn-and-couldn't-help-but-stare loud. What are people thinking??? Obvisously they must not be!

Then there's the LOUD MOM. Another little monster was running back and forth through the restaurant. Completely out of control. Mommy dearest was screaming her fool head off. I looked at Joanna like, "People do realize we're in public? Inside? In the year 2010?" Bizarre.

There was also this tiny little girl with curly reddish hair and the bluest eyes. She looked like one of the babies on the Northern toilet paper packs they used to have. She and her big brother were there with Grandpa, and although she must have walked back and forth to get a drink like 34 times, she was a little mouse about it. She was SO stinkin' cute. Regardless. No more family nights for us in Timbuktu.

Today I had an appointment for a check on my diabetes. Up to Grand Rapids. Jacob was scheduled to go to Auntie Shawn's, thank God, because it was HOT. They ran though sprinklers most of the day, so he is currently passed out on the couch. Our air conditioner doesn't really work in the car, so Doug has to keep charging it. It worked fine this morning, but by this afternoon, not so much.

The down to Plainwell to go to the backcracker. Somewhere in there were Costco and Meijer also. I'm like a walking zombie. So tired. Eyes a wee bit messed up... just drooping like crazy. Heat effects MG probably more than any other outside influence other than stress. Stress is the WORST thing for me and my MG. Heat is second. As far as the stress thing goes: I have a workaholic husband (who loves me very much, but he's just always busy), several chronic illnesses to juggle, 25 pills (at least) per day to take, appointments to schedule (which I have to go to alone now since Doug won't take work off anymore)....not to mention 3 dogs and a very, very busy 3 1/2 year old. The list is endless.

And time management....That stresses me to the core. If ANYONE has this figured out, can you PLEASE fill me in? How do I get 24 hours of stuff done in 24 hours when I need to sleep for 8? Frustrating. But I know that's life for lots of folks...which is why I'm praying one of you will have an answer!!

It's been hot here. I mean HOT. I've never done heat exceptionally well, except for when I was a child, and was just in the pool 12 hours a day. We literally went from frost to 90 in less than a week. Welcome to Michigan!

I'm not sure what it is about the heat and MG...espeically humidity. When it's this hot, I walk outside, and everything in me from the brain down just says "I'm going to collapse now." And
me and my brain have to yell at my body to knock it off! Oh well. Tomorrow is supposed to be a little better, then this weekend, gorgeous.

Ann Arbor Friday for plasmapheresis, so that's my week. I'm one pooped pup.

Up Down Up Down Up Down

Good grief.

Wednesday night was SO fun...and yesterday was awful. I was on the verge of tears all day. I had to go to my hubby's work Christmas party, and asked him to come and pick us up (which is what he usually does). It's very difficult and exhausting to take Jacob anywhere on my own. Besides the fact that I can't tighten the straps on his carseat as tight as they should be. I just don't have the grip or arm strength. It gets pretty snug, but not as tight as it probably should be.

So he is super-stressed at work. They are nearing the end of a 10+ million dollar expansion, and doing start-ups this week. It's just a pain in the butt. (Not to mention that something started on fire as he was leaving).

At supper last night I said to him, "So work is really stressing you out, huh?" And he's like, "It's not so much work as it is stuff like today...having to come and get you and Jacob. I should have just asked you to take the car." OUCH. (I ended up taking Jacob home by myself because when he came home to get us, he took the truck). I just lost it. He was like, "What's up?"

I told him I haven't been telling him how I feel because I know he's stressed and I didn't want to add to the mix...but that I feel like I'm sick when it's convenient for him...like when he doesn't want me to go anywhere, or do anything. But when it INconveniences him (messy house, having to pick me up, etc.) then I'm fine to do whatever. I FINALLY got it out. I've been feeling that way for MONTHS.

PLUS, even though I felt lik sh!#, I tried really hard to look nice, wore a new necklace and earrings, a pretty black and purple shirt (no, not my new one, Joanna!). I put on some black shoes. They looked really cute. However, I KNEW I wouldn't be able to walk well enough because of my balance, so I got my cane. THAT'S when Doug called to say I would have to drive home. So...I changed my shoes so I could walk better. Stupid clunky sh!#-kicking shoes. Nice.

Did Doug tell me I looked good? Nope. Did he even notice? Nope.

I know part of that is just a man thing, but I feel like I'm so alone in this house with this disease, and I told him as much. (For any of you who know or see my husband and read this blog, please don't say anything to him...) He's (and to some extent I have) fallen into the trap of "Oh, we're married now, I don't need to be as nice and sweet as I did when we were dating or first married. And when I have a couple of good days, it's like he forgets my limitations.

Don't get me wrong, I wouldn't trade my husband for anyone in the world. This man slept on the couch for SIX MONTHS while I was in a hospital bed in our living room when I first got out of the hospital. He had to suction my trach several times a night. He still worked full time, took care of me full time (someone came to stay with me during the day while he was at work). He is a hard worker and wonderful provider. He is super smart and ingenious and clever. I know he loves me and I trust him with my very life. He is faithful and a Christian...He is my earthly ROCK. (But as you know, rocks aren't very sensitive!) Sorry, couldn't resist.

It felt good to get it all out, and we'll just see what happens from now on. Probably the same thingf that always happens. Things change for 10 minutes until something else comes along. {Sigh}

It's been a crappy couple of weeks with the trach. I'm going to have to make an appointment to see the ENT in January...I may just need a new trach. The one I have is a year old. Maybe that's the problem. I keep tripping over the stupid dogs, and wrenching my hips. It just gets old being able to name what's RIGHT about you more quickly than what's wrong.

Oh, and to top it all off I took the Dr. Oz "Real Age" test. I'm 52. Nice. Well, sometimes I feel like 90, so I guess that's not TOO bad!!

Yesterday was SUCH a Calgon Day

Oy vey. You guys remember (well, most of you) those Calgon commercials? The mom is dealing with 16 screaming kids, the laundry is piled up, the kitchen is a mess, she's trying to cook, there's sauce splattering all over the walls an dceiling, her face...her hair is a mess...someone shows up at her door with something she needs to pay for, her husband calls and says he's staying at work until 7 PM....and she finally just says, "Calgon take me away!" And she's immediately whirled to this luxurious bubble bath, candlelit room, hair up, looking smashing....

Well. That was me. Sort of. Only 1 child. Husband hunting. Add exhaustion and muscle weakness from MG, fibromyalgia pain so bad I couldn't even touch my own skin, and a child who was on fast forward and whose volume knob had broken off at "ear-splitting." Add 2 dogs, one of whom is capable of knocking me off my feet, a chair that I tripped on (Jacob's) to avoid said dog, wrenching my knee and "bad" hip....a headache from the pit of hell, Mommy guilt for not being physcially capable of dealing with my son yesterday...Oh, and we can't forget the adorable I'm-old-enough-to-be-your-mother Consumer's guy walking around our property spray painting trees that have to be removed, including my 100 year old pear tree (which I defended out in the rain to possibly save half the tree)!!!! I kept screaming "Calgon!!! Where are you??????"

Well, she didn't answer. Which may have been okay, because if I soak in the bathtub my muscles get too weak to get back out! And although I've lost EIGHT pounds from my new meds, I'm not quite svelte enough for my Prince Charming to scoop me up.

I'm bawling, tripping, yelling, dropping things on my feet, probably THE most impatient human on the planet at this moment, and I'm like WHERE'S MY BIBLE???? I thought, if I don't find something about being patient right this minute my head is going to pop off and spin around.

So I come across Colossians 1:9-14 (NKJV) (Thank you Lord!)

For this reason we also, since the day we heard it, do not cease to pray for you, and to ask that you may be filled with the knowledge of His will in all wisdom and spiritual understanding; that you may walk worthy of the Lord, fully pleasing Him, being fruitful in every good work and increasing in the knowledge of God; strengthened with all might, according to His glorious power, for all patience and longsuffering with joy; giving thanks to the Father who has qualified us to be partakers of the inheritance of the saints in the light. He has delivered us from the power of darkness and conveyed us into the kingdom of the Son of His love, in whom we have redemption through His blood, the forgiveness of sins.

This is why I beg for your prayers. I WILL NOT make it through this life without them. Nothing else will help. Sure, I have wonderful friends who have really stepped up and are helping me physically around the house...but the day-to-day living, where the rubber really meets the road....without God, without dear friends, some of whom I haven't even met, praying for me on a consistant basis....I simply could not do it.

So I thank you for your prayers. They matter more to me than you could ever know. Who could have thought through this blog, sitting at my computer, I can find peace, knowing there are people out there lifting me up to the Creator of the Universe.

Thank you.

Waiting and waiting; Tips to stay healthy

Have you ever noticed that when you're waiting for something important time seems to just stand still? Ask any woman who has ever gone over her due date!

But seriously....It feels like I've been waiting to hear from the neurologist for a month now. It's been almost 48 hours. Doug was like, Honey, do you know what it's going to take to organize an MRI under sedated with a trach? I was like, oh, yah, I get your point. They have to get the machine, the radiologist, an ENT, the anesthesiologist, and my neuro will probably want to be there too. I'll probably have to stay overnight, so they'll need a room for me...

Then my darling husband gives me no less than FIVE Days in the next 4 weeks that he can't go. I was like, um, you said it yourself....do you know what it takes to put this together??? So I e-mailed the neuro (AGAIN) and gave him the dates, but I was like, if it's one of those or like DECEMBER, book it and I'll figure something out. I'll see if my parents or one of my sisters can bring me and then Doug can come the next day. For those of you who have known me for a while, this is a HUGE deal...that I could seriously go with anyone but Doug, and not need anyone there overnight. I used to be so anxious that I couldn't even function without Doug. I'm much better now...but I still need my hubby!

I'm not going back to Ann Arbor this Friday. I am feeling okay MG-wise, and don't feel like dealing with the possibility of more stress. One thing about autoimmune diseases, and especially MG is that stress makes the sypmtoms 100 times worse. This will give you a laugh: when I was doing pretty badly the last couple of months, Dr. Teener's nurse said, "You just have to identify the stressors in your life and do whatever you can to avoid them."

Yah, I'll let that sink in a minute.

I have an unpredictable chronic illness that requires a 280 mile round trip every 3 weeks for needles to get stuck in me, a workaholic husband, a 3 year old whom I am homeschooling, 2 dogs, a huge farmhouse, chickens, ducks, 2 turkeys (which will be dinner shortly).....but I have to remove all stress from my life. I'm like, well, unless I move to a convent on the top of a mountain....

And then, add to all this (which I have to say I just knew was going to happen) Jacob got a cold. Some hideous germ from the disgusting rides at the freak show, I mean, County Fair. Exactly 2 days later...the snot starts running. Just like when we went to Binder Park Zoo. Exactly 2 days later and he had a high fever and spots....roseola. Okay, for those of you going, what's the big deal, kids get sick...well, it's not a big deal for HIM. It can be a big deal for ME. Besides dealing with a cranky little one who doesn't feel good, and doesn't sleep well, I have to NOT get his germs when we're in each other's faces all the time.

But, I told Doug I am NOT getting sick. I will just keep saying that over and over. I will NOT get this. I think sometimes it's a kiddie virus anyway, maybe one that I've had already in my life. I used to get colds all the time, but since I've had to be the germ police, it's been a lot better. It is amazing what you can avoid getting if you're just super careful. People may stare and think I'm an idiot, but whatever....I'll live! Here are some of my tricks:

1. Always, always, ALWAYS wipe off the shopping cart you use. You can actually get hepatitis from a shopping cart. I know...how gross is that?

2. Wipe down your remote, phone, etc., if you have lots of people in your house, and do it FREQUENTLY when someone in your house is sick. Do the same for doorknobs and light switches. These are things people don't usually think of.

3. Skip this one if you have a weak stomach or like buffet's: Avoid them! Or at LEAST use your OWN utensils when you get food out. I swear this is true: At an Old Country Buffet one time with Doug's grandma, I saw someone drop a spoon out of salad dressing onto the floor. Another person comes by and puts the spoon on the metal shelf in front of the food. A little girl comes by and sticks the spoon in her mouth. Her mother takes the spoon out of her mouth and puts it back in the dressing.

4. Don't sip out of anyone else's glass or bottle...ever.

5. Wash your hands a LOT. You could probably avoid 75% of illnesses if you'd just wash your hands more often!

6. Don't touch your face: don't rub your nose, or eyes, or anything with your hands. Use a tissue or napkin.

7. Carry antibacterial wipes whereever you go. For example, when Joanna and I go McTalking for Bible study (and our sanity) either she or I wipe down the table before we sit down. Even if they've just "cleaned" it...it's still germy and filthy.

8. Wash your hands or use antibacterial hand stuff after you touch money. Money is one of THE dirtiest things on the planet.

9. NEVER lick your fingers unless they are just cleaned. Never lick your fingers when counting paper or money. YUCK.

10. Ask your friends and family to let you know if they are not feeling well before you get together. Remind people that it's very important that you don't get sick.

Anyone else have other tips for avoiding germs?

Trach Trauma

ARGH. I love the new, bigger trach, but oh my STARS is it horrible to take out and clean every other day. I can pop it out no problem, which amazes me, because before I couldn't even THINK about it...or look at it when it was out...just freaked me out having this hole in my neck! Now with the surgery it looks kind of like an inny belly button. WAY inny. : )

Anywho. Coming out is no big deal. Putting it back in however, OW. Holy Pain in the Neck Batman! Ar ar. It's like giving birth backwards. Or trying to shove a large lemon up one nostril. Or...well, you get the idea. I clean the outside twice a day, but have to take it out to get the inside really clean. Yikes. I just can't put it back in. I tried the first couple of times, but I literally can't push hard enough to get it in. Plus, it's really hard to force yourself to cause bodily harm to yourself...it's like your brain fights against your hand trying to shove it in. My hand and arm were just shaking with the force I was exerting to get it in, yet it wasn't going. So thank God Doug isn't squeamish, cuz he's the one to put it back in.

I have felt like crap the last couple of days...double vision, really tired, a bit weak. Jacob has a little cold, so I wonder if I'm fighting it off. Germs make my antibodies get stronger (like anyone else) but then I get MG symptoms. Grrr.... Stress makes all my symptoms worse, and dealing with a best friend with terminal cancer doesn't help much. We were going to see her tomorrow, but with Jacob having a cold, I don't want to bring ANYTHING to her to get her sick. We'll just have to wait til he's healhty again.

Anywho...that's all for now.