Thursday, September 30, 2010

Book Review

Cast of Characters by Max Lucado

I have been a Max Lucado fan for a long time. This book did NOT disappoint. In fact, I think it is one of his best. Lucado writes about several well known Biblical characters (Joseph, David, Job) and a few not-so-well-known folks as well (Jairus, Mephibosheth, Abigail). After reading the Scripture pertaining to the character, Max Lucado retells the story in common language.

It's almost as if the author is talking directly to me. One of my favorite chapters is about Mephibosheth. This man is Saul's last living relative. He also happens to be a cripple (Mephibosheth's mother dropped him in her haste to escape.) King David sends his servants to get Mephibosheth and bring him to live in the palace. Mephibosheth comes before the king quaking. He assumes he is going to be killed. Instead, he is invited to dine at the king's table and live in the king's palace.

From the book: "In those days the new king often staked out his territory by exterminating the family of the previous king. David had no intention of following this tradition, but the family of Saul didn't know that. So they hurried to escape....Weren't you also born of royalty? And don't you carry the wounds of a fall? And hasn't each of us lived in fear of a king we have never seen?"

Mephibosheth has done nothing to earn this; it is simply to whom he is related that gives him this honor. In the same way, God invites us to His live forever in His Kingdom, and all we have to do is ask. I would highly recommend this book.

Disclosure of Material Connection: I received this book free from Thomas Nelson Publishers as part of their book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission's 16 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising."

New Pulmonolgist

Thanks to Medicare, I was forced to find a new pulmonologist so that I could get requalified for my oxygen use at night. My neuro. can't sign anymore, I have to go SEE a doctor, and get a written request for an overnight pulse oximetry test, so I can show them my oxygen dips down dangerously low at night ergo I need oxygen.

It's so lovely when I have to do these idiotic tests. Like I'm just going to be better one day and not need it. Jerks. MG is a CHRONIC illness people. CHRONIC. As in always. As in not getting better.

So I have to go a night without oxygen, wear this stupid pulse ox all night, wake up with a migraine, kill a few brain cells, all because Medicare wants to make sure they aren't paying for something that I could squeak by without.

Then my PHARMACY (the 3 month mail in one) held my birth control pills hostage because the INSURANCE company called them to tell them my CellCept interacted with the pill and MAY cause it to be less effective. So I had to get clearance from my NEUROLOGIST for the pharmacy so I could get my damn birth control pills. Heaven forbid I get pregnant again, we all know how much that cost last time! I had to call my GP three times to find the right person who understood the situation, and get them to call in one month of B.C. locally, and RE-issue the Rx to the mail in place.

It's ridiculous. Like I have nothing better on which to spend what little energy I have!

Anyway, at least I like the pulmonologist. He's really cool. Very nice, knowledgable, and best of all, he listens to ME.

To top it all off, I feel like crap. I've been fighting something for 2 weeks and I appear to be losing.

Wednesday, September 29, 2010

Some Funnies Because I'm NOT Feeling Fun Today

Probably my favorite:

Johnny's mom looked out and saw her son playing church with the cat.

A while later, Johnny's mom heard the cat yowling and ran to check it out. "Johnny, stop it! Cats hate water!" she said.

"Well," Johnny said, she shouldn't have joined my church then."

Hope you all fnd something today that makes you smile.

Tuesday, September 28, 2010

One Tough Thing

One really tough thing for me, as I have mentioned before, is dealing with Jacob sometimes. And it's not behavioral-wise, it's like, "Mommy, can we go outside and play?" And I'm having a terrible day and in tons of pain and can't do anything, for sure not go outside. And I have to say no to that face. Could you say no to this face??

Yeah, I know. Me either. It's so hard. He is exceptionally understanding for just 4. But it breaks my heart and makes me angry that he KNOWS what a hospital is, and that Mommy IS different from other Mommies, and that I have to take 20+ pills a day. Who wants their child to have that experience?

I'm done asking why when it comes to me, but I still struggle with Jacob sometimes. He asks God to make me better, and we talk about heaven when I will be able to run and play like every other Mommy.

Sometimes he digs his little elbows in just the wrong way on my legs...oh my GOSH. The pain is excruciating. It's all I can do to stop the reflex of grabbing him and pulling him off. I NEVER want him to feel unwanted.

So...for all you experts out the heck to I allow a 4 year old to be physical without going outside or playing with him? We have a trampoline inside, but that doesn't usually last too long. He needs rough and tumble stuff.

Anywho. Thanks once again for listening to the whine. Next time I'll try to have some cheese to serve with it! : )

Monday, September 27, 2010

Fighting the Crud

Ug. This yucky, cruddy, nasty cold/cough thing is going around. Yesterday Doug made a roast chicken for dinner and then homemade chicken and rice soup. Oh my gosh. SO good. He spent the day making a flatbed truck and animal cages for Jacob out of popsicle sticks! I just got to rest and try to get better.

Jacob carefully measuring!

Daddy handing Jacob the sandpaper for the rough edges.

Working together!

Ta-Da! The first finished cage.

Working on the flat bed truck.

Jacob took this picture of Daddy using the saw.

The finished product!

Sunday, September 26, 2010

The County Fair

My little cowboy.

My fearless child had to ride the Ferris wheel for the second year in a row.

Feeding the llamas and goats.
Riding this big 'ol camel all my myself!!This is truly the biggest cow I have ever seen in my life. Yikes!

Daddy and Jacob by the same tractor we have--just about 60 years newer!

Jacob LOVES all the animals. He wants to pet them all. He talked for DAYS before the Fair about petting a big pig.

Low and behold, we walked out of the barn and here were two GIANT pigs, and the owners let Jacob pet them. He was over the moon!

Saturday, September 25, 2010

Controlled Chaos

The best thing about today was that my darling husband moved my cell phone booster antenna from the front of the house to the back of the house, and my internet speed went from 79k to 431k. IIIII KNOW!!!! Color me happy!!!

This afternoon was CRAZY. But not really bad crazy, which was cool. I went to the grocery store for a few things...all by myself! Very nice. Came home, Doug's folks were here, and Doug was butchering our turkeys. His parents and Jacob were all outside.

Then the DIRECTV guy came...very nice young man. Very nice, Christian, handsome, SINGLE man, ladies!!! He was here forever, poor guy, because he really couldn't figure out what was going on with our system. He came to the conclusion that it was our electric (gee, the house in only 150 years old, ya think the electric is weird??) and that we had too much plugged in to one circuit. So we ran an extension cord from the DVR to the office so that it's not all on the same one. (I'm sure you will all sleep better tonight knowing these monotonous details!)

Anyway. So everyone is here, and I had a wonderful conversation with an old friend (as in, have-known-forever-old, not age-old). Bless her, she's going to make some meals I can throw in the freezer and chuck in the oven when I've had a crappy day and Doug is working late or whatever. What a blessing!!! Thank you Linda!

So it was a little nutty here with everyone in and out, but hey, it wasn't bad!

One thing I'm a bit concerned throat has been scratchy all day. Not hurting really, just scratchy...but Doug said that's how his started. Please pray!!

Life is difficult, but God is good.

Friday, September 24, 2010

What About Obligation?

So I'm talking to my counselor yesterday about how overwhelmed I am, and how exhausted I am, and since Doug is sick there's more I have to do, etc.

He suggested making a list of what I do, what I love to do and what I'm good at. I'm like, well that's easy...but where does obligation fit in here?

He looked at me like I asked a question in Hungarian. What obligation do you have? he asked.
I was like, um, my dogs out...feeding them...taking care of my child...

Okay, so let's add a column for things I HAVE to do: like put the dogs out (technically I don't HAVE to, but I'm not cleaning up after them so...), feed and clothe Jacob, meet his needs (not all his wants, at least I've got that part down!)

Aren't there still obligations in life? Am I not obligated to TRY to take care of my house? I make all the phone calls and all the joy that goes with scheduling things for all of my doctors (who seem to keep growing instead of compacting!) I pay the bills, I do the budget...half the time I give Jacob his baths....the other day Doug had to go to the doctor (which NEVER happens) and Blackie jumped in the stupid duck pond (for which we have no longer have ducks.)

So after Jacob's bath, I knew I'd have to give Blackie one, because he stunk, and Doug wouldn't do it when he got home because a. he doesn't care if the dog stinks (he works at a poop plant, and says he can't smell it, so obviously I'M the better smeller of the two of us!) and b. he's really sick and doesn't have the energy.

FRUSTRATING. The only things that get sacrificed are the things I want to do, and according to my mental health expert, those are the things I SHOULD be doing to retain some semblance of sanity. (My words, not his...he hasn't checked me into the funny farm yet...although I think he's seriously considering making reservations. If he doesn't, maybe I will!!)

So what do YOU think? Do you have obligations? How do you handle them if you have chronic illness? Since we have a car payment now we really can't afford to bring anyone in to help, but because Doug has a great job we make too much to qualify for "help" of any kind.

Ug. Please let me know how you do this!!!

Wednesday, September 22, 2010

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.

Tuesday, September 21, 2010

How Did I Get Here?

When I was in college...I had it all figured out. Graduate college, go directly on to a Masters program, have a Masters degree in education, start teaching, and continue to on to my PhD. I would be done with the Masters by 25 (at the latest), then get married, and start having kids. I was a Christian, I was told I could do whatever I wanted to when I was little (an injustice we continue to say to our children...more on that in another post), and I had a supportive family and abuse, no hardships to speak of. I mean, my dad worked his hiney off so we could go to private school, so he was absent sometimes, but...overall, my life was good, I had lots of advantages, I loved school, and I was quite intelligent.

So how did I end up here? An almost forty-year-old mom to one child, living out in the middle of nowhere, married to an incredible man, homeschooling of all things, got the Bachelors, but no Masters, certainly no PhD. I have health issues that I could have never anticipated, and other than being married to said incredible man, there really isn’t anything about my life that I planned on that worked out. At least on paper.

And honestly, I’m not sure how I feel about that. I mean, I know that MY plans started veering off course when I started working for Towne Air Freight…but I became very successful in that industry and I really loved it. But I knew it wasn’t my destiny. I did know my destiny would take me where I am today, yet here I am.

Jeremiah 29:11 tells us that God has plans for us. Plans to give us hope and a future. So I cling to that. I’ve posted about hope before; if I didn’t have hope, I can honestly tell you I wouldn’t be here. If this life was all there is, I would have totally checked out. I can promise you that.

But because I KNOW that this life is but a fleeting moment in the grand scheme of things; that my time on earth is so short, and that compared to eternity this is NOTHING. Because I KNOW that my Redeemer LIVES, and that I will be whole and perfect in heaven someday.

I will be strong again. No matter how old my baby boy is I will pick him up and throw him in the air, something I’ve really never been able to do.

I will get down on the floor with him and let him jump all over me, because in heaven, there is no more pain.

I will laugh and laugh and laugh, just like I used to, with tears rolling down my cheeks, you know, those kinds of tears that only hearty laughter can employ, without running out of air.

I will swim underwater and sleep on my stomach and take showers with my head tilted way back and not worry about drowning or suffocating.

I will see my Jesus, face to face, and KNOW that every second of every moment of pain and suffering that I may have gone through will evaporate when I look into his eyes, and He says, “Welcome Home. You have fought the fight. You have run the race. You didn’t quit. Well done.”

Oh, and I’ll be skinny too! That doesn't stink at all! : )

Sunday, September 19, 2010

Going Out With A Bang

Well, as is typical with chronic illness, plans change. I wanted to spend time on a final post for invisible illness awareness week to inspire you, to move you, to raise your level of awareness, and incite compassion for those who suffer. I wanted to go out with a bang.

Instead, I'm just fizzling a bit. I had to go to Ann Arbor Friday for plasmapheresis. No biggie. It went pretty well. A bit slow, but nothing major. Got home and Jacob's nose was running. He has allergies, so I thought no big deal. Friday night he was coughing a little and really runny and stuffy, and I was just exhausted from the treatment. I was especially tired after this one.

Friday night, up most of the night trying to deal with Jacob, who was mostly ticked off because he couldn't suck his thumb. Saturday morning, I feel like I'm coming down with something. Asked people to pray. (Especially since I, in effect, just had my immune system removed.)

Today, Sunday, we were finally going to start looking at church together as a family. Obviously that's not happening.

So as happens very frequently in my life, I didn't get a thing accomplished this weekend, I can't do any of the things I'd like to, and my baby is sick. I'm NOT trying to elicit sympathy, I'm simply trying to explain that I live daily with that frustration of just. never. knowing.

And I was always the one with the dayplanner very carefully scheduled! And some people say God doesn't have a sense of humor.

So again, have extra patience dealing with people. If you have a friend who is chronically ill, please don't forget about them. They can be doing great one day, and in the proverbial weeds the next. And it goes on like that, day after day, never knowing what it's going to be like when I wake up. Good day? Bad day? Lots of change in my pocket? None?

Day by day. That's all I can do.

Thursday, September 16, 2010

Why Do I Blog?

I receive writing prompts from MamaKat, and this week there are so many good ones! But this week is also National Invisible Illness Awareness Week, so I have been writing about that, and having guest bloggers. This one ties right in to both!

Why do I blog? What does it mean to me? Well, let me start by saying that this is the second time in a week I have been at my husband's work place with my computer because my internet connection at home is having issues. So I came here so I can blog.

Blogging means a lot to me. In short, it is my connection to the world. Because I have myasthenia gravis, and quite a severe case at that, I really don't get out much. It's been a long time since I've been able to be part of a regular church, and I can't just jump in that car and go somewhere. Usually, if I have to run an errand, someone either has to watch my son, or I just can't go. Normally by the time I load him and our stuff into the van, I'm too tired to drive.

So this blog opens my world quite a bit. I have friends I've met through blogging that I never would have met otherwise. Friends in Michigan, Texas, New Jersey, Ohio, New Hampshire, even Belize! And I'm SO thankful for each and every one.

Blogging is important to me because I want to educate people about myasthenia gravis and chronic illness. MG can also be a largely invisible illness, and it's so easy to judge people because of it. I have a trach, so I look more "sick" than some, I suppose, but nevertheless, people stare, and judge. You can just tell by looking at them.

I started blogging for cheap therapy. My BFF Joanna got me into it. I was like, no, yours is so funny, I don't want to compete, I'll just read yours, and for a long time I did! But then I realized how HUGE the blogosphere was! Whoa! (By the way, there's no competing with Joanna...if you read her blog, make SURE you put your coffee down first!!)

I can vent. I can laugh. I can cry. I can share my faith. I can share my illness, my pain, my joy, my triumphs. I love to write. I love people. Once I got started it just seemed natural to continue.

So to anyone who reads my blog: Thank you. Thank you for leaving wonderful comments that lift my spirits, thank you for following me. Thank you for the e-mails you send telling me a certain post made an impact on you. It means so much to me to know that even ONE person is effected positively in some way by this blog. That's all I could ask!

It's been almost 2 years and 500 posts, and I'm more thrilled with blogging that I ever have been!

Blessings to you all!

Wednesday, September 15, 2010

Being the Caregiver Ashley's story

I am so excited to have my second guest blogger in one week! Be still my heart! I met Ashley blogging, and she is a darling young southern belle recently transplanted to New Jersey. I can't quite imagine the culture shock! She and her husband are in their 20's, and she is his caregiver. I am so thankful for meeting friends like her through blogging. It's awesome. She is one tough cookie. Here's there story.

I asked Ashley to share with us what it's like to be a caregiver and she wrote this beautiful post:

In February 2008, my husband, David, was diagnosed with Psoriatic Arthritis. We were in our early twenties, having only been married a year and a half. The rheumatologist said we'd caught the arthritis early. He expected David to go into remission. Shortly after his diagnosis, we bought a house, and I was able to quit my full time job to become a housewife.

David's arthritis continued to get worse until January 2009, when he experienced his worst flare ever. He was bedridden. I had to dress him, and help him in and out of the tub. Now David is doing better, but he still has flares and our life is far from normal.

A few weeks ago, I was telling David how much I thought his acupuncture treatments were helping him. He responding by saying that, "Yeah, acupuncture helps, but the Lyrica the doctor put me on, that really helps a lot. I feel a lot better on it."

I was so excited. The Lyrica was helping! David was feeling better. I imagined being able to attend Sunday School in a few weeks. And in a month or two, we'd start walking the dog together after dinner every night. Next summer, David would be able to wakeboard again. We would start going out on dates. We could go to the movies or even bowling!

Reality came crashing down the next morning when David had to leave our church service early because of neck pain. The Lyrica is helping, as are all of his other treatments, but there is no cure. David isn't even in remission.

You'd think that by now I wouldn't keep getting my hopes up with every new treatment. But every time we change his diet, try a new pill, or see a new doctor, I hope and pray that this is it. That this will be the treatment that puts him in remission.

David and I were high school sweethearts. He's the only guy I've ever kissed. I cannot express in words what it's like to see the man you love disabled. Being a caregiver or well spouse to a young person with chronic invisible illness is really hard. I am constantly frustrated with a pharmacy or insurance company, and I struggle with guilt over not getting David help for his pain sooner. I spend a lot of time researching treatments and tips for David's arthritis and preparing meals that meet his strict dietary needs. I certainly did not expect this season of our life to be about chronic illness.

Psalm 39:6-7 Man is a mere phantom as he goes to and fro: He bustles about, but only in vain; he heaps up wealth, not knowing who will get it. But now, Lord, what do I look for? My hope is in you.

If I had to say what I thought God was teaching me through my husband's chronic illness, I would say flexibility and reliance on Him. When it's time to sign up for the church picnic, we don't. We just tell people, "We'll come if David is feeling up to it that day." The simplest of routines gets thrown out the window if David has a flare. I like my plans and schedules, but apparently God has other plans.

Proverbs 19:21 Many are the plans in a man's heart, but it is the LORD's purpose that prevails.

Most people our age our self-reliant. They've got it all under control. We don't. Not that I've completely perfected relying on God. Far from it. But I can say that I rely on Him and put my hopes in Him more now than I did when David was diagnosed. It took me a really long time to see any good in David's Psoriatic Arthritis. If you are struggling with chronic illness or being a caregiver, you are not alone! I encourage you to read Kerri's story and check out

You can also read the rest of Ashley's story on her blog, A Young Wife's Tale.
Thank you Ashley!

Monday, September 13, 2010

Invisible Illness...Did You Know?

September 13-19 is National Invisible Illness Awareness Week. Today I wanted to tell you some things you may not know about chronic and/or invisible illness.

Did you know that almost 50% of the population of the United States has a chronic illness?

That by 2020, according to the Department of Health and Human Services 157 million people will be affected by chronic illness?

INVISIBLE ILLNESS makes up 96% of chronic illness. These people do not use a cane or any assistive device and may look perfectly healthy.

Did you know that 60% of the chronically ill are between the ages of 18 and 64?

The divorce rate for couples with chronic illness is over 75%.

I have to stop here for a moment. I just kept saying, WOW. That is HUGE! Seventy five percent!Three-fourths. Only 1 in 4 marriages with chronic illness survive. I can understand why, because it's hideous to live with, and it's horrible to take care of.

It makes me all the more thankful for MY husband, and for the other solid marriages I know of where the couple is dealing with chronic illness. Thank you to our caregivers. God Bless all of you. We know it's hard. It's hard on us too, but you have to watch a loved one suffer. You usually work outside the home as well. If you don't, you have to keep the home and cook, many times special diets. You run the errands, call the doctors, deal with insurance, and for that, we thank you.

So from the bottom on my heart, thank you!

The risk of depression is 15-20% higher in people with chronic illness.

Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

And finally, did you know that those who use their religious faith to cope are significantly less depressed, even when taking into account the severity of their physical illness? In fact, the clinical effects of religious coping showed the strongest benefit among those with severe physical disability. Some 87 patients hospitalized with serious illness who also then suffered depression were followed over time in another study. The patients with a deep, internalized faith recovered faster from the depression, even when their physical condition wasn’t improving.

There is a reason for my hope in trials, for my peace in chaos, for my joy in sadness. His name is Jesus. I know someday I will be with Him, free from all this external baggage. I will be whole. I will be healthy. I will be perfect. And I will be free.

Invisible Illness Awareness Week

Invisible Illness Awareness Week officially kicks off today. I have been blogging about it throughout the month, and will continue to do so occassionally.

Today I am very excited to have my very first guest blogger!!! Margaret from "The World As I See It" has graciously agreed to blog about her Invisinle Illness, MS. Margaret and I are "bloggy" friends, and I'm so thankful to have met her! Thanks again, Margaret!

You look at my picture ( I am the one in pink) and you say she looks normal enough. After you spend a few months getting to know me you may begin to think I am lazy or unmotivated. You might think this because I don't go out after work and on the weekends. You may get mad if you ask me to do things and I am always saying no but what you can't see from just looking at me is that I have Multiple Sclerosis(MS).
MS is a disease where my own immune system attacks my Central Nervous System. I was diagnosed when I was 15 which at the time was really young to get diagnosed. The reason they found out was because my left leg would just stop working randomly. It would basically drag when I was walking around and would do it for no reason at all. After much pushing of the doctors they finally did the tests and told me I had MS.
I remember that day like it was yesterday. I was glad to know what was wrong with me but I also was scared to death. No teenager wants to find out they have a chronic illness and to top it off it is invisible at that. I am now 25 and still struggle on a daily basis because of this disease. I have tried almost all of the "safe" drugs that are out there for this disease. Right now I am on one that has major risks associated with it but for the first time in 10 years I am stable and that is an amazing feeling. This disease as various symptoms and it affects everyone differently.
Here a few common symptoms fatigue, problems with walking, numbness, tingling, slurred speech, tremors, stiffness, problems with vision, cognition, speech, and elimination. The summer time is a hard time of year for me because the heat just sucks what little energy that I have out of me. Women are more likely to get this disease but men can get it but it is rare. They have found that if people with MS take high doses of Vitamin D do better than those that don't. No is really sure what truly causes this disease either.

This week is invisible illness week so please before you judge people stop and talk to them because they too could be suffering with something you can't see! I want to thank Kerri for asking me to do this guest post. If you have any questions at all please drop by my and I will be happy to answer any questions you may have!
Thanks again Margaret...God Bless you as you continue fighting this illness one day at a time!

Saturday, September 11, 2010

Meet Me In The Stairwell


You say you will never forget where you were when
you heard the news On September 11, 2001.
Neither will I.

I was on the 110th floor in a smoke filled room
with a man who called his wife to say 'Good-Bye.' I
held his fingers steady as he dialed. I gave him the
peace to say, 'Honey, I am not going to make it, but it
is OK..I am ready to go.'

I was with his wife when he called as she fed
breakfast to their children. I held her up as she
tried to understand his words and as she realized
he wasn't coming home that night.

I was in the stairwell of the 23rd floor when a
woman cried out to Me for help. 'I have been
knocking on the door of your heart for 50 years!' I said.
'Of course I will show you the way home - only
believe in Me now.'

I was at the base of the building with the Priest
ministering to the injured and devastated souls.
I took him home to tend to his Flock in Heaven. He
heard my voice and answered.

I was on all four of those planes, in every seat,
with every prayer. I was with the crew as they
were overtaken. I was in the very hearts of the
believers there, comforting and assuring them that their
faith has saved them.

I was in Texas , Virginia , California , Michigan , Afghanistan .
I was standing next to you when you heard the terrible news.
Did you sense Me?

I want you to know that I saw every face. I knew
every name - though not all know Me. Some met Me
for the first time on the 86th floor.

Some sought Me with their last breath.
Some couldn't hear Me calling to them through the
smoke and flames; 'Come to Me... this way... take
my hand.' Some chose, for the final time, to ignore Me.
But, I was there.

I did not place you in the Tower that day. You
may not know why, but I do.. However, if you were
there in that explosive moment in time, would you have
reached for Me?

Sept. 11, 2001, was not the end of the journey
for you . But someday your journey will end. And I
will be there for you as well. Seek Me now while I may
be found. Then, at any moment, you know you are
'ready to go.'

I will be in the stairwell of your final moments.


Friday, September 10, 2010


Serenity. Tranquility. Peacefullness. Even-temperedness. Cool-headedness.

Yesterday I was told I needed the Serenity prayer. I'm going to a counselor and yesterday was all about me and anger. I have been so angry lately. So easily overwhelmed.

Tim made a good point: If you have a scale of 1 to 10 on the stress in your life, most everyone wakes up with a zero. They don't wake up wondering if today they will be able to function. If they will be able to fold that basket of laundry or be able to take care of their child.

So when I get up, I'm already at a 6 or 7, just being me. Isn't that lovely. (Some of you who know me are going Mmmmmm-hhhmmm! I KNEW that girl caused stress!) Just kidding. But really, what he said made so much sense. If I seem to be jumping down people's throats at the drop of the hat, it's because the dropping of the hat was the proverbial straw that broke the camels back. That one last drop you think you can squeeze into the glass before it spills over.

But that drop...that one tiny drop that in and of itself is nothing! It's No. Big. Deal. Insignificant. Unless you are already so full of drops that one more just puts you over the edge. I am not an angry person by nature (well, not anymore!) I'm fun. I used to be fun, anyway. I like people. I want to be part of society. I want to in the mix, part of the group, ya know?

But many times I can't. And those are big drops added to my glass. So when the power lines are making lightning in my tree, and I'm setting up for a garage sale and my dog pees on something for sale....when Jacob is being particularly difficult and my TV freezes for the 13th time and my computer isn't working.....I overflow.

I need to focus on what I CAN do...and accept what I can't. And try to change what I can. ERGO, Serenity Prayer: (or the first part of it anyway)

God grant me the Serenity to
Accept the Things I cannot change, the
Courage to change the Things I can, and the
Wisdome to know the Difference.

Wednesday, September 8, 2010

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness

This is a questionnaire that many of my friends with chronic illnesses are filling out, so I thought I'd take my turn. I did something similar to this last year, but I changed some of the questions. This time I'm going to follow the "rules," and answer them all the way they are written. Or try to anyway!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis

2. I was diagnosed with it in the year: 2003

3. But I had symptoms since: 1995

4. The biggest adjustment I’ve had to make is: Going from independent, working, and strong to dependent, disabled and weak

5. Most people assume: Either I can do anything or nothing.

6. The hardest part about mornings is: Just getting going. Sometimes I can't see well, sometimes I can't breathe well because I haven't done a breathing treatment takes FOREVER to get ready to go somewhere.

7. My favorite medical TV show is: Mystery Diagnosis for sure! Love it! I like almost all of them, IF they are accurate.

8. A gadget I couldn’t live without is: My computer. I have to have it, it has to work. Other than my cell pohone, it's really the only technological thng I have!

9. The hardest part about nights is: I have to sleep on a stupid wedge because I can't breathe lying on my back. I can't lay on my tummy because of the trach. In heaven, I will ONLY sleep on my stomach, I guarantee you that!

10. Each day I take __ pills & vitamins. 20+

11. Regarding alternative treatments I: go to the chiropractor, but please don't tell me about this herbal rememdy you know, or how much better I would feel off my meds. I can't take many herbal things because they will make the MG worse, and I've TRIED or been FORCED (when I was pregnant) to go off some of my meds and I almost die. SO no thanks.

12. If I had to choose between an invisible illness or visible I would choose: visible. I get SO SICK of the looks, judgements, etc. If I could I would wear signs, I would.

13. Regarding working and career: I used to obsess about working outside the home, but that desire is fading a little. I know that my most important jobs are wife and mother, homeschooling mom and daughter of God. That's a full plate already!

14. People would be surprised to know: I'm having a hard time with this one....So YOU tell ME if something about me surprises you!!

15. The hardest thing to accept about my new reality has been: not being able to work, being so dependent on others.

16. Something I never thought I could do with my illness that I did was: have my precious baby boy!!!

17. The commercials about my illness: non-existant. Hmm...that gives me an idea!

18. Something I really miss doing since I was diagnosed is: going away at the drop of a hat. No machines to take, no prescriptions to refill, no pages and pages and pages of medical notes.

19. It was really hard to have to give up: my independent life

20. A new hobby I have taken up since my diagnosis is: blogging!!!

21. If I could have one day of feeling normal again I would: Roll around on the floor with my son.

22. My illness has taught me: Not to judge. To be impatient. But most of all, how absolutely precious life really is.

23. Want to know a secret? One thing people say that gets under my skin is: But you look so good!

24. But I love it when people: ask me how I'm really doing no matter how I look

25. My favorite motto, scripture, quote that gets me through tough times is: Isaiah 55:8-9 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." This gives me comfort knowing that God is in control, and that He sees the WHOLE picture.

26. When someone is diagnosed I’d like to tell them: Life isn't over. It will change, for sure. But it can still be good. Find a support group pronto. Your family and friends may be super supportive, and that's great, but they can't 100% understand.

27. Something that has surprised me about living with an illness is: how much stronger I am than I ever thought I could be. To God be the Glory for that!

28. The nicest thing someone did for me when I wasn’t feeling well was: offer to take my child and let me rest. Bring dinner

29. I’m involved with Invisible Illness Week because: I'm all about education. I want people to understand that MANY people have chronic, invisible illnesses, and they are not alone.

30. The fact that you read this list makes me feel: AWESOME!!!

Tuesday, September 7, 2010

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.

Sunday, September 5, 2010

Consumer's Energy: You s#ck.

Dear Consumer's Energy,

I realize that you have a monopoly on power, and trust me, if I wasn't dependent on cool air, oxygen, a nebulizer and suction to live and breathe, I would tell you where to go and how to get there.

Friday morning, after a windy night, 2 power lines were very close together in my pear tree (that you were supposed to have cut down by now). Every time the wind blew, the power lines popped and you could see what looked like a bolt of lightning between the two lines. We were having a garage sale, and every time it popped people ducked. It sounded like gunshots.

I called at 9:19 AM. On Friday. The first time. Someone told me you would get somone out as soon as possible. Silly me thought that would be in a few hours. I called again 2 hours later. Yes, you had my report, and someone would be out soon.

I called 3 hours after that, and you even put in a second report, and ASSURED me that someone would be out FRIDAY yet. When no one had showed by 7:30 PM, I called again, and yet another customer service person assured me it would be "today," and said he was surprised that no one had been there yet! (You and me both buddy).

I did not sleep well Friday night, as you can imagine. I have a neuromuscular disease that requires me to keep my stress level at a minimum, and get plenty of rest. Thanks to you, my symptoms are exacerbated (oh, sorry, is that too big of a word?? They are getting worse).

Saturday morning I called at 9 AM. You would be there as soon as you had someone available. The wires continued to pop and arc. My second call Saturday did about as much good as the previous FIVE calls did.

Sunday, I didn't bother with you, because I really didn't want another lame song and dance, and it wasn't terribly windy, so I figured my house wouldn't burn down today.

Tomorrow (Labor Day) is supposed to be very windy, and yes, it is the last day of our garage sale.

What do I have to do to get someone out here? Get electrocuted? Call 911? Call the fire department? The media?

You are ridiculous. Your "service" is a joke. You can NOT tell me that in SIXTY hours, there has not been one truck available to come out and fix these wires. I am past irritated. I am past frustrated. I'm even passed scared. I am ANGRY. I am so angry. You don't give a crap if my house burns down and I think that's about the crappiest thing ever, because YOU are the only ones who could do a damn thing about it.

I will be contacting the person closest to God in your company, you can be assured of that. I will file a complaint with whomever I need to. I will do whatever it takes. You are a big company and act like you can just sh!t all over people. And you CAN! That's the frustrating part. We all need power.

May someone pee in your Wheaties, and may you experience the fear, frustration and anger that you have caused me.

Very,VERY Sincerely,

Your Less-Than-Number-One-Fan (but don't ARE number one on a different list I have!)

Thursday, September 2, 2010

Finally Got Some Post-It's Out! is sponsoring the coolest thing. National Invisible Illness Awareness Week is September 13-19. The theme this year is "Each one can reach one." SO...we hit the town with our post-it notes. Here's me in the credit union parking lot checking out how this would work. I had a bunch of different saying on post-it notes, all with the website on the bottom.
This is actually the desk of the salesman we bought our new van from. He sold Doug his truck 15 years ago, and he is a Christian guy. He also has horrible chronic back pain. (So if you think of it, pray for Perky Knoll. Yup, Perky is his "real" name.) He wasn't by his desk, but saw us and came running...thought we were upset about something. So he let me put the note on his calculator anyway!

At Farm and Fleet, I put one on the 50lb bags of animal feed!

At Pamida (my favorite store in Allegan) I put one on the electric cart.

This is what it said:

Then I put one on the big box of a rocking chair.

I'm sure painters experience pain. Or know someone who does!

Many women are moms. If you're a Mommy and you have chronic illness, it can be tough! can help!

It was really cool to put these all over town. I really hope that SOMEONE will go to the website because of a note they found. That would be awesome.
On a totally different note...It rained most of the day for our garage sale, but there are always a few die-hard garage salers. We keep praying tomorrow will be better! So I'm MIA, you'll know why!