Friday, December 31, 2010

Goodbye 2010

What a year it has been. As awful as my health has been this past year, I’m not going there. As I reflect over the course of the whole year, there have been some really amazing things that have happened.

Jacob finished potty training. That’s a HUGE whoo-hoo right there. No more poopy diapers. That’s almost enough for the whole year right there! And because he did, we got a really sweet puppy dog, Blackie.
We had another new addition to our family: Baby Haylee

Jacob continues to grow and amaze me every day. He is the most wondrous combination of noise, boisterous energy, non-stop curiosity, crazy brilliance, all-boy-rough-and-tumble, and tender compassion. The child has such a beautiful heart.

I have reconnected with a woman who is now like a sister to me. We were neighbors when I was born, and she used to babysit me. She recently told me she remembers the very day I was born. Even though I had not seen her in 30 years, we are as close as sisters today. She is wise and intelligent, caring, encouraging and supportive. I love you Linda!
I’ve made friends through a computer. This blog. Friends that pray for me. Friends that encourage me. It’s like a miracle to me. I need people. I can’t get out much. So God has brought them to me. Thank you, God.
I’ve deepened relationships I already had. I’ve done amazing Bible studies with a fabulous friend. Love you Joanna.
I feel closer to my husband than ever. Chronic illness is beyond difficult in a marriage. In fact, 75% of all marriages where one partner is chronically ill end in divorce. That’s 3 out of 4. WOW. I am so blessed to have the man I do. God prepared him since he was a child to have every gift, talent and strength he needed to be my provider, caretaker, partner and friend. I love you more than ever honey.
Looking to 2011, I am anticipating new treatment for the Myasthenia, and better health because of it. My prayer is for medical remission. I am eagerly awaiting a cough assist machine to internally strengthen my lungs.

I am looking forward to homeschooling Jacob and being astounded every day at his character, compassion, and zeal for life.
This year has brought heartache and rejoicing. I have seen the mountaintops, and lived in the valleys. I have felt loved and I have felt lonely. I have been faithful… and faithless. And I am thankful to the One to cannot be unfaithful. To my God. My Redeemer. He truly is my Strength. Without Him, I would not have hope. And without hope, I would not have life.
Here’s to 2011: May God bless you and your families. May you see health and feel love as you have never experienced before. May we all be kinder to our neighbor, and take care of those in need.

I am a better person for experiencing the support this blog has introduced to me, and will be forever grateful for it.
Happy New Year!

Wednesday, December 29, 2010

Quick Update

I'm so seriously wiped out.

My treatment went really well yesterday, thank God, and Jacob was WONDERFUL.

I'm going to be working with my neurologist and pulmonologist about getting something called a cough assist machine to use several times during the day to try to help get rid of the atalactysis (sp?) (smooshed lungs at the bottom).

Also waiting on insurance approval for the Rituxan. There's probably more, but I'm so exhausted I can't think straight.....more tomorrow maybe.

Monday, December 27, 2010


Don't even know what else to title this! What a day. I know I'm hard on myself, but it felt like EPIC failure. I'm so exhausted. Today was the first day alone with Jacob since my crisis. I don't know how to do nothing. But if I don't learn real quick, I'm gonna end up in the hospital again, and again, and again.

Then I deal with stuff like this:

I call my primary doc (PCP) to get the blood and sputum culture results from when I was in the hospital 10 days ago. (And after a complete round of the ONE antibiotic I know I can take, so really what's the point in even getting the results??) Anyway, it was like 10:00 this morning.

About 4:15, I decide I'm finally going to get in the shower. Phone rings before I get in. It's my PSP's nurse (She's great, actually.)
Nurse: So I've been going back and forth with Dr. _____ and he doesn't think he can treat you without seeing you, without knowing what's going on. He suggests calling the doctor who treated you.

Me: {wondering what showed up in the tests if he won't "treat" me} I have called Bronson 4 times and have spoken to twice that many people and they keep telling me to call my PCP.

Nurse: Oh, you don't have the results yet?
Me: Oh my GOSH. No.
Nurse: Ooooh.....okay, just a minute.

Comes back after a minute: So who ordered all these tests?
Me: I have no idea. They just did them at the hospital after they admitted me. They poked and prodded and tested all night long. I guess they didn't believe me when I told them it was a myasthenic respiratory crisis.

Nurse: Right. Um....Okay, let me talk to the doc and I'll get back with you today.
Me: Good. Thanks.

So I get in the shower, because it's already 4:30, and who REALLY calls right back?
This nurse.

Nurse: Okay, all the blood cultures show nothing, but the sputum culture shows some kind of staph and Dr. ________ wants to treat you with doxycycline.

Me: Staph? What the..... I've already been treated with a full course of antibiotics, and besides, I can't take doxycycline. So shouldn't the Cipro have taken care of this? It's not the "icky" staph, right? {I'm thinking last time I had staph pneumonia I almost died...if I have staph, shouldn't I feel worse than THIS?}

Nurse: Oh, no. No, not that kind. I'll talk to the doc about the antibiotics and call ya back.
Me: K.

I believe her this time, but I'm half done in the shower, so I have to finish up. Had plenty of time this time, then she called back and said, yup, the Cipro should've taken care of it and you should be good to go.

So after TEN days, I find out there WAS something but it SHOULD be gone now because whoever the heck I saw gave me antibiotics before seeing any test results.

I'm sorry, but what the hell???? I went to a "good" hospital. They are supposed to know things. Some things. I saw at least 2 different neurologists. Alllll the stress of waiting for results and calling every doctor on the planet 17 times. What a joke. And I wonder why I end up bawling at the end of the day.

I would ask Calgon to take me away but even if I did, I'd still be there.
Ya, I know.

Sunday, December 26, 2010


Hey all. What a bizarre last few weeks. Christmas was nothing like I had planned it was going to be, yet it was okay. I'm....processing. I guess that's the best word. I'm trying not to be over emotional, or angry, or frustrated, or hateful...I'm just really trying to accept that I've been acting like a crazy person for the last year or so.

All of the sudden I find myself in this bizarre kind of time warp where I've been in and out of the hospital a crapload of times in 2 weeks, and I'm back to almost exactly 10 years ago. When I got out of the hospital for the final time, I think I felt better by my birthday than I feel now. My 30th birthday. My 40th is in nine days.

Only this time I knew exactly what was going on, and did it to myself. Push, push, push. One more errand. One more batch of cookies. One more story for Jacob. One more load of laundry.... One more.... And then it just stopped. I couldn't breathe, and I could not do one. more. breath.

There's this whole acceptance-defiance thing. It's like I completely went mad a year or so ago and decided I was going to act like I wasn't sick anymore (not consciously, because that would be silly!). Start running errands on my own. Taking Jacob on errands. By myself. Did it matter I could barely see or drag one foot in front of the other or walked around stumbling from double vision? That I was so crabby I was probably a horrible friend, sister, mother and wife? Nope. I was going to do it ON. MY. OWN.

Doug too busy at work? Fine. I'd do it all myself. Jacob went to Shawn's one day a week, so I started going out every Wednesday to either appointments or just going out. I should have been resting.

Now it's like it hit me all over again, after all this time. I have a neuromuscular disease that I have to live with. And deal with. I can't ignore it, because it does not go away. No amount of wishing or pretending can will this disease from my body. I pray. I hope. But I still live with it.

And therein lies the key. Somehow I have to make peace with this life with MG. I can yell at it and scream at it and call it every name in the book....but it will not change. I can rebuke the MG in the name of Jesus, but if Jesus decides that I have not gotten through the journey He has for me, it will stay.

And it is up to me to deal with that.

Saturday, December 25, 2010

Merry Christmas

For unto us a Child is born,
Unto us a Son is given;
And the government will be upon HIS shoulder.
And His Name will be called
Mighty God,
Everlasting Father,
Prince of Peace.

Isaiah 9:6

Wednesday, December 22, 2010

Quick Update

Emotions have been running high. This last week has been a time of deep reflection for me and some decision making for our family.

We are looking into much more aggressive treatment for the MG. Rituxan is a chemo drug used for Non-Hodgkin's lymphoma and RA. It can work really well, but it's really expensive and has scary side effects. We talked about this before, but then it seemed like I was getting better again for a while.

I have been doing way too much, trying to act like healthy person and do the things healthy people do. I need to accept my weaknesses instead of ignore them, because ignoring them sent me right to the E.R.

Tomorrow is another pheresis, then again next Tuesday. The approval process for Rituxan takes a while, so i won't be for a little while yet. Prayers are definitely appreciated.

NOW.....Better late than never....Rachel from This Crafter's Yarn won the CSN giveaway!
I let her know on time...almost! Rachel is a fairly new bloggy friend who also has MG! Congratulations Rachel!

Saturday, December 18, 2010

Club Med (As In Hospital)

I'm going to make this as brief as possible, which knowing me will be difficult. This last week I have been way overdoing it making candy and baking goodies....I LOVE this time of year. Jacob too. Well, I totally overdid it. I usually push myself, but this was like, pushing myself right into crisis. It's never happened this fast or dramatically before.

Thursday night, when I got in bed, I couldn't catch my breath. I've had this once in a while, but this was like going on and on. I was "this" close to driving the the ER right then (about midnight). Friday was Doug's work Christmas lunch, and we went. I was on oxygen at that point, and as long as I stayed relatively still it wasn't a big deal.

Then we walked back to the car afterwards, and I was just gasping for air. I was bad enough off to call the neuro and ask how much to increase my prednisone. I would avoid doing this at all costs, unless the only other option was chopping off my own limb...with a dental pick.

Well, they heard me on the phone and sent me to the ER. So we went to Kalamazoo, because there are no neurologists in Allegan. Was in the ER from about 2:15PM (in my party clothes and "thank-you-for-the-country-music-award-hair) until about 5 ish when they told me I was going to be admitted. Against my will if necessary, because I didn't want to be there.

So I stayed, got a room finally at like 8:30. Doug and Jacob had gone to get me some personal stuff, and gotten back right before we went to my room. EVERYONE was just in love with Jacob. He had to 'help" everyone taking care of Mommy. So they finaly left about 10:00 after I was in my room.

I was already feeling significantly better by then, but they had bunches of tests and cultures and all other kinds of stuff to do. So I had 2 ABG's (arterial blood gas) OUCHIE. The first one didnt' work. Had to poke me again. That's a very special kind of pain. Deep. Ouch. Yuck.

Then of course, in the ER they had started an IV. Hate that. In my room they had to draw blood cultures from tow different sites. First one went like nothing. Didn't even notice that it was in. Not so much for the next THREE times she was poking around for a vein. Finally got it.

Then some ding dong came in at 4:00 AM (what the heck I was still awake) to draw for an A1C. I'm like, did you NOT see the GALLON of blood good ol' Florence Nightengale there just tapped off? Sheez.

Anyway, this morning I had pretty much made up my mind that I wasn't staying again. I slept about 2 hours and 45 minutes. I can't do that. All they were waiting on were cultures which wouldn't be done til at least Monday, and I'm like, I'm not just going to sit here and twiddle my thumbs until you can tell me what's up. Sorry. So I was discharged. :)

So please just keep us all in our your prayers. We have to go to Ann Arbor twice now before Christmas, and I was really hoping not to go at all til after. Doug has been fighting this stupid cold for a month now, and is just run down. He had to make extra trips with Jacob to and from the hospital with me...he's worn out.

Oh well. This too shall pass, I suppose. I will post the winner of the giveaway tomorrow morning, if that's okay. I'm pretty pooped. Thank you for your prayers and support!

Friday, December 17, 2010

Worsening Symptoms

Well, phhht.

I know I have been doing a lot the last few days...making Christmas cookies for Doug's work, and my new hobby, candy making. I'm up to two-layers in one candy mold. (I know, you can sleep better at night now, right?) Next, who knows, maybe...fillings! I know....calm down...try to restrain yourselves....

Anywho. I made a bunch more candy last night to put in a box for my mom and dad. They are in Florida over Christmas (although they probably won't get the box in time for Christmas because I'm waiting on pictures from snapfish). I think I made about 100 pieces last night. The night before that, I made yellow cookie bars, white-chocolate dipped pretzels, peppermint bark, and a butt load of candy. All that after going to the doctor and 2 stores, and I was already exhausted. I just don't know when to say when.

So last night I can't breathe. I mean like can't get air into my lungs because they already felt full of air. I'm fighting with my trach again. It keeps moving out of place, enough so that I can tell the difference in airflow. But continuing to muscle it back into the right place hurts like a mother. So I shove it back in place last night, so I shouldn't have had issues. Yet as I lay in bed, I can barely get air in. Oddly, I'm not panicked. I can tell that it's not my actual lungs, like before when my muscles were strong enough but my lungs were so asthmatic I couldn't breathe.

This was just like I couldn't make my diaphragm muscles or the muscles on the outside wall of my chest to move. So I'm taking these quick little shallow breaths. Fun. I'm wondering if that's why I can't sleep. Before I was first diagnosed I had horrible insomnia. My body was keeping itself awake, because it was dying when I slept!

Seriously, is that not amazing? As sick as I was, my body knew that if I kept sleeping I would have quit breathing long enough to die. God is amazing. That's just ONE tiny way in which He so intriciately made us.

I have one option for improving my sleep dramatically, and probably my energy: A BiPAP. It's basically as close to a ventilator as you can get without being in the hospital. It helps you breathe in AND out. A C-PAP just forces air in. Thing is, I would need a Shiley trach.

The trach I have now, which although I have issues at times, and it causes pain sometimes, is NOTHING compared to the Shiley. I think the devil himself designed the Shiley. If you're unconscious on a vent, yah, fine. But being a living, moving human being, not so much. I cough SO much more with a Shiley. It's way more irritating and painful. It's hideous to change. It's harder to clean. I need suction constantly. I have to have this horrible white foam band around my neck (I have enough hot flashes already!)

So I have to weigh the consequences of decreased breathing and oxygenation at night (which does vary...right now it's just really bad. Sometimes it's much better) OR living in daily hell from the Shiley, but have more energy (maybe) and sleep a bit better.

What a crappy decision to have to make.

However, I must remember that I am not my own. My life was paid for. The cost was Christ crucified. And so the Word tells me that as I glory in Him, so I suffer in Him. So I guess compared to being flogged, mocked and crucified my troubles aren't nearly as heavy as the Cross He bore for my eternal health and well-being. I just have to try to stay focused on that, and take it one baby step at a time.

Wednesday, December 15, 2010

Sarah Palin, Alaska and Kate Goslin

I must first admit I already didn't like Kate Goslin, so this didn't help. I know Sarah Palin isn't everyone's favorite, but I really like her as a human being. She is a strong independent woman. She can shoot as well as she can cook. She fishes and hikes and goes campng in the Alaskan wilderness in the rain and honestly has a good time.

Then we have Kate Goslin. Like I said, I didn't like her already, so maybe I am already bias. However. WHAT A WHINY BABY! My four year old doesn't whine that much. She is so annoying. Just the sound of her voice was like nails on a chalkboard. Here are just a few of her tantrums:

"I've not moving out from underneath this tent." (It was raining. It's Alaska. Suck it up.)

"I'm freezing. I'm cold to the bone. I have never been this cold in my hold life. I've got 19 layers on. I'm still cold to the bone." Wah, wah, wah.

[Looking around] "There's no table! How am I supposed to make 8 sandwhiches with no table? No paper towel? No hand cleaning supplies or sanitizer? (Okay, I'll cut her slack on THAT one.)

[After discovering her hot dog was made from Moose, not pork lips and cow parts] "This is made of WHAT?" And she turned up her surgically altered nose and half dropped, half threw it on the table, whining (and beginining to CRY), "I'm hungry." She continued to cry the rest of the time she was there.

Meanwhile, her kids were having a blast. They were fishing, gathering wood, eating hot dogs and smores...

Piper, Sarah's youngest daughter was SO looking forward to this. She LOVED Kate. Yeah, past tense. Poor kid. Piper was standing by her and Kate says, "You REALLY think this is fun?" And Piper nodded enthusiastically. Kate: "You really like this? You do this for fun?" The light just went completely out in Piper's was sad, but at least she wised up!

Then she looked at the camera and said, "I don't get it. Why would anyone pretend to be homeless?"

I don't know how long she was there, but it wasn't more than a couple of hours. She left and took all the kids with her. The kids were bummed. I can't believe the snooty b!tch couldn't be uncomfortable for one night so her kids could have the experience of a lifetime.

I mean, her ex-husband is no prize either, but she's a media ho, pimping out her kids to the highest bidder. Those children will NEVER be normal. Two of them have been kicked out of their school.

I know she needs help with her kids, but she doens't need to drag them all over the world. Appprently, they were already in Alaska. But seriously. Camping in the Alaskan Wilderness when they've never, ever been camping? Sad to think Jon was the brains of the operation, however...

Anyway. I just had to get that out. I've never seen an adult act like that before! Especially in front of their children! Thank God we have real women to model our lives after, and don't have to emulate the losers on TV.

Don't forget, yesterday's sign up for the giveaway ends Saturday night.

Tuesday, December 14, 2010


My 500th post. I can hardly believe it! I am so thrilled with that! I’m humbled and honored that people care at all about what I have to say. I started this blog as cheap therapy, at the advice of my BFF Joanna. I never DREAMED I would love it so much, use it as a stepping stone to writing a book, and best of all, make friends. I never knew a computer could do so much.

I really am so grateful to each and every one of you who read my blog. SO: Now for the good stuff! I have an awesome giveaway!! I knew I was going to have one for my 500th post, and was trying to figure out what.

Then, with perfect timing, CSN .com Stores offered a $40 Gift Certificate for me to use as a giveaway for my readers! How cool is that?
This gift certificate can be used at any one of's 200+ stores. You could use the gift certificate for yourself or use it to buy a gift for someone! Nice timing for that last minute Christmas shopping. has over 200+ stores offering everything from purses to pots and pans (they have some very cool Rachael Ray cookware!). Going on vacation for the holidays? Need new luggage? Check out the selection of Delsey Luggage. They have some really cool pieces!
DelseyHelium Zip Carry-on Suitor Trolley in Oxford Gray

All you need to do to enter the drawing is leave me a comment on this post letting me know what item you really like from any of the 200+ Stores. You have until Saturday (December 18th) 5:00 EST. Good luck!
Thanks again for stopping by. Have a fantastic day!!


Monday, December 13, 2010

Top 10 Pet Peeves

I'm totally stealing this from Margaret at The World As I See It. (Margaret's totally cool, go check her out!)

This is my Top 10 Pet Peeve List:
(In no particular order)

10. People who think more highly of themselves than they ought. We all put our pants on one leg at a time, so settle down.

9. Dogs that bark and bark and bark and bark. While I would NEVER use one of those no-bark collars, it's not like I haven't thought about it!

8. Commercials. I DVR everything so I can fast forward. Commercials are always loud and whatever Jacob sees, he wants. With no commercials, no whining!!

7. Unsolicited phone calls, ads, e-mail, etc. If I want your services or products, I will use them. If I don't, no amount of advertisement will get me to buy your product or service. In fact, the more you irritate me, the less likely I will be to use your product or service. So back off.

6. People who act like they know what's wrong with me, and what I should do about it. Unless you have myasthenia gravis or some other closely related chronic illness, zip it. You're not a doctor. (I should add a caveat here...people I love (or even like a lot) who offer helpful suggestions out of concern for me are not the same as people who act like they know everything.)

5. Not being closer to my family. (proximity) I live in the sticks, which has its benefits. I love not having neighbors being able to see in my windows or having their noses in my business. But it's a loooooooong drive to Egypt!

4. Whining. From children OR adults. Cowboy up.

3. People who drive like maniacs. Unless you're on fire, or bleeding to death, SLOW DOWN!!

2. Always having to cancel plans because of my health. You'd think after 10 years I'd get used to it, but I don't.

1. Wet countertops in bathrooms. I'm short, so my shirt always gets wet and it annoys me.

Tomorrow is the big giveaway! Make sure you check back!

Sunday, December 12, 2010


I thought I would share some things my child says....Prepare to turn to mush!

"Mommy, do you have to go to the hos-i-ble today?" I can't stand to correct him to say "hospital" because it's too stinkin' cute.

I shared this on facebook the other day. I was putting my makeup on in the bathroom.
Jacob: What are you doing Mom?
Me: I'm putting makeup on.
Jacob: Why?
Me: Because sometimes I like to put make up on because it makes me feel pretty.
Jacob: Mom, you are byoo-tee-full just the way you are! {melt, I know}

When he says prayers, at the end, he always says the same thing. I'm not sure exactly what it is, something like: "In Jesus na-mey-dey-a-pay" AYYY-MEN! (Supposed to be in Jesus' name I pray, but he's got extra syllables in there somehow) I've GOT to get it on video somehow.

Some of his songs:

The farmer in the well,
The farmer in the well,
Ho-high the derrio
The farmer in the well.

He also runs around singing "Aloutte." Here are the lyrics...I'm sure you'll know the tune. (He even sings the's HILARIOUS! Who says nothing good can come from watching Tom and Jerry?)

Alouette, gentille Alouette
Alouette, je te plumerai
Je te plumerai la tête
(Je te plumerai la tête)

Et la tête
(Et la tête)


Alouette, gentille Alouette
Alouette, je te plumerai
Je te plumerai le bec
(Je te plumerai le bec)
Et le bec
(Et le bec)
Et la tête
(Et la tête)


Aywho. Hope you had a smile for the day!
Don't forget to keep watching my blog this week for the CSN gift card giveaway!

Saturday, December 11, 2010

My Favorite Christmas Song

I am part of a wonderful community of bloggers called SITS. If you've never checked it out, you really should. There's a button on my it and away you go.

They sent out some blog ideas for December, since it's a crazy month with the planning of Christmas celebrations, shopping, baking, etc. SO...this was one suggestion, and it was simple: what is your favorite Christmas song?

Total no-brainer for me. Mary, Did You Know. I particularly like the David Phelps version. I tried to put a link at the bottom that will get you to the site where I got the lyrics from, and hopefully you can listen to it from there. This song makes me cry every single time I listen to it...even reading the words makes my heart almost stop. It's overwhelming. It's amazing. It's personal. It's so real.

The thing I miss most about being sick is my ability to sing. I have been singing since I can remember. I still wonder why the one thing I loved so much, something I used to glorify God, was allowed to be taken from me. That is probably something I will struggle with until I get to heaven, and can sing once more.

Mary Did You Know?

Mary did you know that your baby boy
Will one day walk on water?
Mary did you know that your baby boy
Will save our sons and daughters?
Did you know that your baby boy
Has come to make you new?
This child that you’ve delivered
Will soon deliver you.

Mary did you know that your baby boy
Will give sight to a blind man?
Mary did you know that your baby boy
Will calm a storm with His hand?
Did you know that your baby boy
Has walked where angels trod?
When you kiss your little baby
You’ve kissed the face of God?
Mary did you know?
Mary did you know?


The blind will see
The deaf will hear
And the dead will live again.
The lame will leap
The dumb will speak
The praises of the Lamb.

Mary did you know that your baby boy
Is Lord of all creation?
Mary did you know that your baby boy
Will one day rule the nations?
Did you know that your baby boy
Is Heavens perfect Lamb?
This sleeping child you’re holding
Is the Great I AM!

Friday, December 10, 2010

Being Thankful

Well, now to counter-act yesterday's icky, whiny post. It's all still true, but ridiculous nonetheless. I have SO much to be thankful for!

1. My God. He loves me even when I do act like a 2 year old spoiled child. And I'm so thankful that He does. Cuz it happens waaay more than it should!

2. My husband. He is a Christian, he is a man of character, and he is the hardest worker I know. He is a wonderful provider, husband and Daddy.

3. My friends. Though they may be few and far between, they are the BEST!! {Joanna, I LOVE YOU!!!}

4. My computer. And therefore, my internet friends! I am blessed to have just recently met a few more wonderful ladies through the "giraffe tribe" via SITS. They are kind and love the Lord and have been a great encouragement to me. Then there are my "old" interpeeps...from New Jersey (via Dallas) Belize, California, New Hampshire, Florida....and everywhere in between. I am so thankful for this darn computer. I'm not very technologically savvy, but it keeps me connected to people I love.

5. My precious, precious child. Jacob has made me a better person. A better friend, woman, wife and daughter. He has helped me realize how very much God must love me, because I love that child more than I thought possible to love another human being. And I'm SO imperfect. And God, and His Love, are SO perfect!

Thanks for the comments and keeping me encouraged guys....most days my blog, e-mail and facebook are the only "people" I interact with. (Thank God I don't' have a webcam yet...or I'd have to start doing my makeup!)

May you all have a BLESSED weekend.
Love to you all.

Thursday, December 9, 2010

Odds and Ends

So my 500th post is coming up soon. I said I wanted to do a giveaway....and I was trying to figure out exactly what I was going to do, and lo and behold, I teamed up with CSN stores just in time! How exciting! So stay tuned for more info.....

The snow has finally stopped, for now. We're supposed to get another system like the one we just had this coming Sunday. Oh joy and happiness. If ya want a White Christmas, I'll give ya directions, no problem!

On a bit of a more serious note, we are all still fighting crud. Jacob is probably 90% better, which makes my life easier, to be sure. But Doug is still tired and hacking and fighting headaches...I'm trying to get him to go to the doctor, but he doesn't seem to think it's necessary.

Then there's me: I have to keep wiping out my immune system (plasmapheresis) so I don't go into myasthenic crisis, but then with everyone around me sick, I just stay run-down. Not a good situation. So I'm going to whine a minute. Feel free to skip to the end!

I'm quite frustrated and I must admit, a bit discouraged this year. I haven't been able to get to church more than twice in like 7 months. It's very difficult to go anywhere by myself. Even on a "good" day lately, it seems, it's just such an effort. Almost not worth trying. I'd love to go with Doug and Jacob, but if I put Jacob in Sunday school, he's just going to bring more germs home. If we try to keep him quiet during the service, we'll not get anything out of it anyway.

Then there's daycare. Jacob goes to "Auntie" Shawn's one day a week. He loves it. I love it. In the winter, everything gets multiplied by a million though, I swear. Where there were ten sick kids, now there are 10 million. Okay, you get my point. So now I have to decide if I should send Jacob as usual, and get a much needed break but expose myself to more sickness, or keep him home and we both suffer cabin fever.

I just feel hosed either way. I don't know anyone anymore who can babysit my child. I have a phone number for a young lady that was given to me by my PT., but she's in high school, so it wouldn't make a difference during the day. I won't leave Jacob with just anyone....even if I knew anyone (which goes back to not being able to get to church etc.).

It's just one big frustrating conundrum. Next time I will try to serve cheese with my whine. Sorry. : )

Please just keep me in your prayers that I don't lose my mind or hurt anyone. M'k? Thanks.

Monday, December 6, 2010

Talk About Winter Wonderland!

If you've heard the term "lake effect snow" but never seen it, here you go: MY house happens to be at the very end of a tiny "banana belt" of a snow band that always gets THE most snow.

The left side of the picture is the opposite side of my road. Um, yes, there IS a road under there. Somewhere. We often go unplowed for a day or two.

Jacob LOVES to play in the snow! Daddy gets to go out and play too, and this is Blackie's first time in the snow. They are playing "keep-away" with snowballs! Blackie's trying to catch them.

The side yard: the mulberry tree and the chicken coop. You can bet the chickens are tucked snugly in their straw!

Jacob looks like he's winning!
My favorite: the red, rosy cheeks of just coming in from the cold. Four year old Jacob, my handsome little man.

Just FYI, we're up to about 18 inches in less than 24 hours, and it's not supposed to stop til at least 11:00 tomorrow morning. Yee-ha!

Sunday, December 5, 2010

Practical Ways to Help The Chronically Ill

Being chronically ill, one thing I hear all the time is: "If I can do anything, please let me know." I know people really do want to help, but they're not always sure how. And on my end, it is VERY difficult to ask for help, let alone say, "Oh, yes, by the way, could you scrub my toilet?"

Lisa Copen, founder of Rest Ministries, has written an indispensable book called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." You may have a chronically ill friend, or maybe there is someone in your church or neighborhood who is chronically ill that you may not know very well, but would like to help. Here are some ideas:

* Send the person a card letting them know you're thinking of them and praying them. {Speaking from experience, mail time is quite exciting when you hardly ever get out.}

* Arrange to take her children for a day, evening, or whatever.

* Just listen....until it hurts to not say anything. And then listen some more.

* Instead of saying, "I'll pray for you," say, "I'd like to pray for you right now if that's okay."

* Mop his floors.

* Call before you visit, and ask if she has any errands you could do for her while you are on the way over.

* Offer to help out with pets while he is in the hospital.

* Don't tease her and call her "hop along" or "slowpoke" even light-heartedly, {unless they do it first}. Comments you mean in fun can cut to the quick and destroy her spirit.

* Don't say, "Let me know if there's anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead, pick something you are willing to do and then ask her permission. {There is a coupon J.O.Y. (Just Offering You) coupon in the back of the book on which you can write your ideas.}

* Say, "I'll be bringing you dinner a night next week. Would Monday or Tuesday work better?"

* Put a freezable dinner in a disposable or reusable container with a note saying it won't be necessary to return.
I will be posting more of these in the near future. You can purchase this book for yourself or your church on Lisa's website,
I am also working on a packet of information, which will include a copy of this book, that I will be sending to some local churches. If you are interested in obtaining one for YOUR church, please leave a comment with your email address, or email me at They are not ready yet, but I can start taking "orders".
Hope everyone has a safe and healthy week!

Thursday, December 2, 2010


Seems to be the feeling of the day. Or week. Or month. Actually, lately, life!

Gosh. When did I become so incapable of managing life? Stress? Relationships? Everything around me seems to be going to he!! in a handbasket, and here I am, all unaware. I'm so tired. I'm tired of being tired. I'm sick of being sick. I'm OVER being overwhelmed. (Like that? Me too....I'm proud of myself.)

This damn disease has already taken so much from me. I know there are reasons. I get that. But let me tell you, there are days when that just. doesn't. matter. I'm weak, I'm tired, and none of my responsibilities ever go away. I have zero energy today. I just don't care. It doesn't matter if I don't feel good. I still have a child to take care of, and things that need to get done. I can't just curl up in a ball and let the world go on its merry way. (Trust me, I've tried).

It's a good thing it's simply not in my chemistry to give up, because I would have by now, a thousand times over.

Wednesday, December 1, 2010

Holiday MeMe

1. What is your holiday wish for your family?

GOOD HEALTH!!!! I would LOVE it if we could go a whole year with no ER or hospital visits!

2. What is your Christmas morning / Hanukkah Nightly tradition?

Doug and I put the presents under the tree after Jacob goes to bed on Christmas Eve, so when he wakes up Christmas morning his face just lights up. It's pretty cool. We also make a birthday cake for Jesus.

3. If you could ask Santa for one, completely decadent wish for yourself, what would it be?
A super-fast, high falutin' computer that never slowed down, got viruses or crashed. Top of the line!

4. How do you make the holidays special without spending any money?

Well, it costs a little money, but usually we have everything in the house. We make goodies for our friends...candies, Christmas cookies, homemade gifts from Jacob. Those are the best!

5. What games did you play with your family growing up?

New Years Eve was the best. My dad worked two jobs most of my childhood, but on New Year's Eve he would sleep some during the day so we could have special treats at night and play games. Once a year my mom would buy Chicken In A Biscuit crackers, and a cheese ball, other fancy crackers....we children were in heaven! We always played Aggravation. Sometimes we played cards. My siblings and I played on the Atari! Pac-Man, Space Invaders and Asteroids!

6. What holiday tradition have you carried on from your own childhood?

We weren't huge on tradition, per se. Mom put the presents under the tree sometime the week of Christmas, and we would try to guess what they were, of course. We always celebrated on Christmas Eve, at night, and got our stockings Christmas morning. We got to open one present the day before Christmas Eve, which we dubbed "Christmas Adam." Ar ar. Doug and I don't do any of that though. Doug is a "wait for Christmas morning" kind of guy. Ppphtt.

7. Where would you go for a Christmas/Hanukkah-away-from-home trip?

Out West....Colorado, Montana, Wyoming, New Mexico, Arizona. I'll live there someday, hopefully sooner rather than later!

Tuesday, November 30, 2010

Ann Arbor Yesterday

Ug. I hate going to Ann Arbor to get phresis on an "off'" day. For example, 98% of the time we go on Friday. This time, for various reasons, we went yesterday (a Monday). I don't know if it was because of the holiday weekend and people took an extra day off or what.

The FOUR main players (people who know me the best) including our beloved Dawn, who is my nurse most of the time, were gone. GONE. That left four people who were physically capable of doing the treatment: one woman who has done my pheresis once or twice, one who did it once, couldn't get the needle in my EASY arm (had to take the thing out 3 times!), one who has never done it, and one part-timer who has run me once before. I got the part timer.

This woman is completely capable, and is a very nice, compassionate person. She just doesn't know ME, how my veins run, etc. Both of my anicube (sp?) veins (the vein where your elbow bends) run crookedly. I know, I know. NOTHING about me can be simple and straightforward.

So the needle wasn't right in my draw arm (where they take the blood out) from the beginning. I could just wasn't right. I can't tell you how I know that, or how to fix it, I can just tell if it's not right. So for the first 45 minutes, we played with the needle (the width of a fork tine) pushing it in and out every few minutes to see if we could get a better position. NOT happening.

Since my return arm (where the blood with the new plasma goes back into me) was primo, she switched it and made THAT my draw arm. (The draw arm needs the best position.) After another 30 minutes or so, the needle that was not right from the beginning completely faded out, and she had to stick me again, with an angio needle (slightly smaller in width, but longer and sharp as a scalpel). That lasted about 30 minutes, and I wasn't completely done with the treatment yet (one bottle to go) but I was like that's it. I'm DONE! So we stopped. I normally run in about 1 hour and 10 or 15 minutes. This had been over 2 hours. It was NOT fun.

Now I have a hard little ball in my left anicube vein (the draw arm) and I don't know if it's a scar tissue blob or a clot. Nice. And just think, I get to do his every three weeks! Whoo-Hoo!!

I love my life I love my life I love my life.

Sunday, November 28, 2010

Quick update

Yesterday I still felt horrible and Doug was coughing his head off, but today we all seem much better. Have to go to Ann Arbor tomorrow for plasmapheresis, so Doug's parents (who came here for Thanksgiving today since we were pretty sick Thursday) took Jacob overnight tonight. Movie night at my house!!! YAY!!!

Would appreciate prayers for safety tomorrow and that everything goes well with the treatment.

Saturday, November 27, 2010

Thanksgiving at my Sister's

Because my parents winter in Florida, we had Thanksgiving AND Christmas last Sunday at my sister's house. We don't do a lot for presents since there are so many of us, and times are tough. I passed out my yummy cookies and candies that Jacob and I made. My sisters each had little gifts for us as well.

The kids make out okay, but Doug's mom and dad spoil Jacob rotten, because he is their only grandchild. So between Doug and I and his folks, yikes. Too much stuff! We actually did scale it down this year though, and asked them to do the same. Trying to get away from all the commercialism of Christmas.

So here are a few snapshots of my holiday.

My niece Jessica, and her baby girl Haylee.

We brought homemade coleslaw. Doug makes the BEST. This is the biggest carrot on the planet. Doug has a normal sized head of cabbage in his hand!

Proud Grandma (my sister Lori) with her very first grand baby.

Mom, Dad and Doug at the end of the Thanksgiving table, in front of the tree. Yes, we're confused on this side of the family.

My little boy is SO big! Here I am with Jacob, and tiny baby Haylee. {Sigh}.

Wednesday, November 24, 2010

True Thankfulness

Matthew 25: 40 “Truly I say to you, to the extent that you did it for one of these brothers of Mine, even the least of them, you did it unto Me.”

I saw a show on TV the other day called I Survived. (I love this's story after story of people who beat the odds and survive the most dangerous, horrible, unimaginable circumstances.)

This particular episode had a story about a missionary in Haiti. He was from California. He lived in Haiti at least 6 months out of the year, running an organization that helped the needy (pretty much 90% of the population in Haiti). He worked with people in the slums, in the ghettos, and in the gangland.

One night he was driving through some gang territories to bring a small child to an airport to get him to the United States for eye surgery that would save his vision, possibly his life. Suddenly gunfire broke out all around him. He himself was shot, although the child was uninjured.

He was being kidnapped for ransom. The gang members asked for $300,000. The missionary had to laugh; he tried explaining he was a missionary, his organization had no money! Eventually he was released for $3000.00, and was able to bring the child to the US for surgery.

I saw how these people lived. I saw the cardboard shanties and the nasty water. Now, especially, after the horrible earthquake and cholera outbreak, these people definitely qualify as "the least of these."

But you don't have to go to Haiti to find the least of these. Look around you.

The woman whose husband just walked out on her and their children, leaving her a single mom working 3 jobs to keep her children fed and clothed.

The soldier's wife, raising a baby alone while her husband is overseas.

The homeless man you pass on the street every day on your way to work. Have you ever really seen him?

The elderly man with no family left. No one to visit him. No one to cheer him up in the old folk's home.

The chronically ill. Those who can't leave their homes without help. The shut-in. The ill. The imprisoned.

What you do (or don't do) to these, you do unto the LORD Himself.

Please be mindful of all we have to be thankful for, and reach out to someone who may need YOU to be Jesus with skin on.

Tuesday, November 23, 2010


UG. So sick of this. Jacob got a runny nose Sunday, the day we were supposed to go to my sister's house and celebrate Thank-mas or Christ-giving, whatever you want to call it. My parents left for Flordida yesterday and aren't coming back til who knows then, so we celebrated Christmas and Thanksgiving together with my family in one day.

So I called Lori to tell her Jacob has a runny nose, and she said don't worry about it, come on over. So we did. Now Doug and I are both sick. I hope everyone else stays okay.

I was JUST starting to feel a little better and able to do some things, and now I'm sick again. I think I need to pull jacob out of daycare. I don't want to, because it's his socialization, and MY break. But I don't see a choice. I'm sick of being sick. On TOP of all the other BS I have to deal with. Happy happy joy joy.

Monday, November 22, 2010

Perfect Gift From Children

You don't need to have a lot of money, time, or even ENERGY, really, to do this craft, because you can do as little or as much as you want at one time.
Jacob made calendars for both sets of grandparents for Christmas. Mine are leaving for Florida today (already??) so we had to have theirs done yesterday, for our "Thanks-mas, Christ-giving" day with the family. The entire outline can be found at . I'm not going to show every month, but a few of my favorites. I laminated them so some of the pictures are a little shiny.

This is January; it shows the Ten Commandments (Jacob's hands each painted brown, no thumbs).

Basically, you use your child's hands (one foot) to make a picture, and they have a Bible verse. I changed mine a little, and cut out everything to put on construction paper so it would be a little hardier to laminate.

This is one of my favorites too....It's a Lamb. Upside down hand, then add marker detail.

Of course you have to have the turkey! We had a lot of fun making this. It takes time, and a willing child, but we did it!

My favorite of all: Baby Jesus in the manger. You paint the wrist brown, and then about halfway up the palm whatever color you want the blanket, then peach for the face. Loved it!

Saturday, November 20, 2010

Busy Baking and Candy Making

Jacob and I were busy, busy, busy yesterday! We baked the cookies last week, but everything else we made TODAY. Yikes! We're celebrating Thanksgiving and Christmas tomorrow at my sister's house.

I've never made candy before. It's really not that hard, but there are a couple of things you MUST do. Like tap the trays after you pour the melted chocolate in them...get's the bubbles out. Didn't do that on my first ones, and you can tell.

This was my first batch. The red and green ones I didn't tap the bubbles out, so they're kind of melty looking. These are mint. I'm so impressed with myself! (well, kind of!)

Cherry candy! SO SO good!

Peanut-butter-Chocolate and Chocolate coated pretzels.

Red Velvet Cookies dipped in white chocolate and sprinkles! Doug made the spritz cookies in the middle. Then, white chocolate dipped pretzels. Yummy!

Peanut butter-chocolate and Chocolate candy. I'm gettin' the hang of this!

Peppermint Bark. YUM!!!

Jacob and I started about 1:30 yesterday afternoon, and got done about 8:00PM. I didn't really stop either! Just to make Jacob lunch....I didn't even eat lunch! I was in the zone. Felt good. I was way too keyed up though, because I didn't fall asleep until about 2:30 AM. Ug.

Friday, November 19, 2010

Thank You To My Readers Day

Just wanted to take a minute to say thanks to everyone who reads this blog. I know there are people who read it that never comment, and I just wanted to let you know I appreciate it. (Comments ARE like bloggy validation by the way, hint, hint) : )

But seriously. This blog is really important to me. One, because I love to write. Two, because it's been very therapeutic for me, and three, it's very important for me to get information out about Myasthenia Gravis and Chronic Illness.

So big thanks to all of you. For your support, your encouragement, your kindness. I appreciate you all, and am grateful for your time!

Stay tuned....17 more posts and it's the big 500th post giveaway!!

Tuesday, November 16, 2010

Why Am I Burned Out?

This is a writing prompt from MamaKat's weekly writing prompts.

One of the prompts for this week is, "Why are you burned out?" Since a million things bombarded my brain, I thought, well that's a perfect topic. And, since I've spent the entire morning so far putting out little "fires..." thought I'd share.

1. We are getting new insurance next month. While this doesn't effect me TOO much, since Medicare is my primary, all of my prescriptions will still be paid by the new insurance. We have a HUGE copay: $2400.00. The good news is that our medical savings account will be front-end loaded, if you will, so we will have the money there. The BAD news is, NOTHING is covered until the deductible is met. One plasmapheresis treatment is over $4000.00. Medicare will pay the first hunk, but then it goes to the dedeuctible of our new plan. One of my medications is like $1600.00 for a three months supply. So we use up all the $2400.00 right away, and we have nothing to pay medical bills with til more money grows in the account. It's not like flex that you can borrow against. Confused? Me too.

2. Since we ARE getting this new insurance, I'm trying to get every refill possible in November yet so that they are covered and we just have to pay the copay. That means keeping very careful track of Medco, because they have been known to NOT fill a prescription and not tell me for WEEKS. So I've been calling everyone and their brother about medicine and billing this morning.

3. I've also had to check on a claim filed with our CURRENT flex account for mileage. They have the stupid $2.00 parking stub covered, but don't have the $45+ for mileage. Ug. So I had to e-mail them.

4. I've been waiting for blood work results for Jacob (he's fine, just routine stuff plus a check for lead, and his iron levels). If they are normal, we can cancel our appointment for tomorrow. If they are not, we have to keep it.

5. I have a four year old boy. 'Nuff said.

6. I have 3 dogs. Mmm-Hmm.

7. I'm trying to write 2 blogs and a book.

8. I homeschool my child.

9. "We" are stepping up discipline BIG TIME in order to prepare our son for life. We already do pretty good, but I am learning SO much more from my dear friend Shawn. She's the parenting guru. Love you Shawn!

10. I live with chronic disease that never, ever takes a day off.

SO....THAT'S why I'm burned out! is still good. : )

Sunday, November 14, 2010

More From My Hospital Journal

If you missed the first part, you can check it out here. My mom kept a journal for me while I was in the hospital. Here are a few more entries.

October 20, 2000 (Friday)

Thursday I was pretty frustrated and upset. I'm trying to write and they can't read my letters. Patty was my nurse today. She's nice and very helpful to mom and dad.

Dr. Selwa said she would increase sedation today so I wouldn't be so anxious today. I did a lot of sleeping today. Mom and Dad felt better because I was more at ease and peaceful.

I had my second treatment at noon today [plasmapheresis]. These will help me feel stronger. Mom told me Gordy and Dee were coming to see me tomorrow. I wrote, "In all my glory." The humor is still there. Another time I wrote, "I have no underwear on, humiliated." Also wrote, "I have no modesty."

[I totally remember this feeling. I was always a very modest person. VERY modest. To be there, knowing I was "exposed" to say the least, added to my anxiety and sadness.]

Saturday October 21, 2000

Mom came in about 7:45 AM and I was already upset. This tube is gagging me, then I need to be suctioned. "Yuk." I try communicating with mom by writing but it isn't very legible [In the notebooks I kept that I wrote in throughout this whole time, I saw how I had been trying to communicate. I was making little mountains....Like a capital A without the cross-stroke over and over and over. I remember being SO frustrated that no one understood. I was like, I'M the sick one here, people!!] and no one could figure out what it is.

Gordy and Dee came today. It was good to see them. Dee and I exchanged a few words...mine were mostly looks. As Dee says, "one look says it all!" One time I wrote "smart-ass" to Dee. We kid with each other, we love each other a lot. I also wrote, "When I'm better, Dee and me are going shopping." Mom added, "And out for the best lunch you ever had." Somehow, liquid food down the nose directly into the stomach doesn't do much for me.

In the afternoon, the tube in my nose came out, "I may have accidentally pulled it in my sleep." I told my mom I had a bad dream and all pink and blue stuff came out of my nose. My nurse that day was Jay. He was nice but I'm not too comfortable with a male nurse.

Jay had to put the food tube back down and that was TERRIBLE. When Dr. Smith came in about 5PM mom told him I had a terrible day. After explaining everything that happened he said they would "put me to sleep." How I loved hearing that phrase. Mom and Dad checked on me about 8PM and I was sleeping like a baby.

Saturday, November 13, 2010

Misc. Pictures and Stuff

My favorite fellas.

He has slept like this since he was a tinybaby.

The most handsome boy on the planet.

Friday, November 12, 2010

Still Hangin' In

Well, my last post (before Veterans Day) was a real upper, eh? I was not in a very good place. I've been dealing with a lot of grief lately, but not realizing it. I figure, it's been 10 years, I should be "used" to this, or it shouldn't bother me anymore.

Well, it's NEVER going to NOT bother me, because it's not the way I was made. I was fearfully and wonderfully made, and knitted together in my mother's womb (Psalm 139). Myasthenia gravis is a crippling condition, mentally, emotionally, physically and spiritually. Unless and until I fully comprehend that, I am going to struggle.

I am not just a physical being. I have a mind. I have a soul. I have a spirit. And everything is effected by this wretched disease.

I thought that grief was like a checklist: first you're in denial, then you're angry, then you bargain with God, then you're depressed, then you accept it. Well, it's more like a labyrinth than a ladder. It's not a straight-up-the-pegs-go-through-it-once-and-you're-done-kind of thing. It's more like a crazy, twisted maze that starts you off in one direction, then spins you in another, only to find yourself back at the beginning all over again.

My latest setback was the realization that barring direct act of God, I will not have any more children, neither biologically nor by adopting. Several things have lead up to that decision, which I'm not quite up to sharing yet. All I know is that the hole in my heart seems so big and so consuming, that I feel as if I'll never recover.

I always wanted a lot of kids. I NEVER wanted an only child (no offense to only children, it's just a personal thing). Doug is an only child and it is immense pressure. I never wanted that for my children.


It's not fair. But it is what it is. I can't change it. I don't know that I'll ever accept it either. But I know I have to grieve. I don't want to, because it hurts. A lot. But the alternative is worse. Keeping it inside only makes it grow, and consuming, and overwhelming, and before you know it, you're in a very deep, dark hole that there's no escaping.

So I will grieve. It will take time. A lot of time. But as Job said, "I KNOW that my Redeemer lives." Whether here or in eternity, there will be redemption.

Thursday, November 11, 2010

Thank You To Our Armed Forces

Thank you to the men and women who have served and are serving our country. Thank you for fighting for freedom and principals. Thank you for standing up when so many others choose to sit, or worse yet, walk away. Thank you to the families who live without loved ones for long periods of time because they are all over the world keeping MY family safe.

My niece has moved back up to Michigan to stay with my sister because her husband has been deployed again, and they have a 2 month old baby. Thank you Daniel. Thank you Jessica and baby Haylee. Your daddy is the bravest man I know.
Thank you to those who have bled and died so that I can vote. So that I can live freely. So that I can believe the way I choose to believe, and express it without fear of imprisonment or persecution. So that we stay the Land of the Free. You have all already demonstrated that we are the Land of the Brave.

May God bless you and your families, keep you all safe and protected until you are reunited again. Thank you for your sacrifice.

Wednesday, November 10, 2010

Stop The Pendulum

"No man is an island entire of itself; every man is a piece of the continent, a part of the main;.... any man's death diminishes me, because I am involved in mankind." John Donne

Ever wonder what it would be like to NOT be involved in mankind? Anyone ever felt like they WANTED to be an island? I honestly never have in my life, until now. To just be by myself, no one to make me cry or hurt me or confuse me or break my heart. Just me and God.

My life is a pendulum. I am the pendulum....or more technically I should say I'm the "bob" at the end of the pendulum. (That's what the thingy on the end of a pendulum is called. Learn something new every day). It seems like anyone or anything has the control of the motion, and I'm just along for the ride.

I've always wanted to be part of something...some group. Sisters. Friends. Mothers. Bloggers. Christian women. Wives. Like live and in person, not just behind a screen. But lately I feel as if it would just be better if I could just isolate myself totally. Then I could only disappoint myself. I would be the only one to blame.

I think me and the Lord would do just fine. He won't rip out my heart and crap in its cavity.

Tuesday, November 9, 2010

Misc. Pictures and Stuff

Picking out pumpkins to take home. Short sleeves and shorts. Last year it was long sleeves and jackets! Ah, Michigan!

Decorating a pumpkin.

The Pumpkin or The Fly???

Unhappy camper about something!

Carving pumpkins with Daddy!

This is the itty bitty puppy that weight 9.8 pounds about six months ago. My WORD

Jacob's wonderful artwork. (They are dinosaurs.)

What a kid!

Monday, November 8, 2010

It's A New Day

This morning, the first blog comment I read was from my new friend Patty Ann. (And it was very sweet, thank you Patty!) I, in turn, went to her blog to read her latest post and thank her for reading mine. I'm SO glad I did!! I have taken one paragraph from her post that stuck it's proverbial fist out through my computer screen and smacked me in the head. Her blog post was taken from President Dieter F. Uchtdorf's talk given at the October 2010 General Conference (I'm not sure what conference...) Anyway.

After the last 2 months, no words could have been more perfect for me to read at this very moment in time:

"My dear brothers and sisters, we would do well to slow down a little, proceed at the optimum speed for our circumstances, focus on the significant, lift up our eyes, and truly see the things that matter most. Let us be mindful of the foundational precepts our Heavenly Father has given to His children that will establish the basis of a rich and fruitful mortal life with promises of eternal happiness. They will teach us to do “all these things . . . in wisdom and order; for it is not requisite that [we] should run faster than [we have] strength. [But] it is expedient that [we] should be diligent, [and] thereby . . . win the prize.”

Somehow, even though I've heard the same thing literally hundreds of times by dozens of people (slow down, don't rush, pace yourself, don't over do it), these words got me. They sunk in. It is almost as if I have finally granted myself permission to relax. Proceed at the "optimum speed for my circumstances." Mmm-mmm. Can I get an AMEN?!?!?! I don't know what it is about a certain phrase or set of words, but the way these were put together simply sang to my soul.

"It is not requisite [required, necessary, obligatory] that we should run faster than we have strength....but that we should be diligent and thereby win the prize." Finally. I think I'm going to have t-shirts printed up, wallpaper my house, shout it from the treetops (well, maybe not. I can't really shout, and I certainly won't climb a tree!) but you get my drift. This is my new mantra. My new dawn. My new day. My new life.

And I'm feelin' GOOD!

Sunday, November 7, 2010

A Page From My Journal

When I was in the hospital trying to get a diagnosis, my mom kept a journal for me. Yes, I do know I have the best mom ever. I found it on the shelf yesterday and was reading through it again. Thought I'd share an entry or two. My words are in [brackets].

October 18, 2000 [the day after I arrived by helicopter to University Hospital in Ann Arbor]

Mom and Dad came in early this morning. I am extremely unhappy with this tube down my throat. It is most annoying. I'm asking when this tube is coming out. They try explaining that I need it for breathing. This disorder [all they knew at this point was that it was neurological] I have has made my muscles weak and has done some nerve damage. They think it's called "myasthenia gravis." This can be treated with a treatment called "blood plasma exchange" [plasmapheresis]. Also cortisone is given and possibly other drugs as long-term treatment. [There is no cure].

All I know is I'm laying here with no underwear on, tubes everywhere and I can't communicate. I try by writing on paper with a marker. I haven't lost my sense of humor though. I wrote, "Do I look fabulous or what?" It made mom and dad laugh.

October 19, 2000

This morning Dr. Smith talked with mom and dad. Now he says they aren't sure if it's myasthenia gravis because although I have many of the symptoms there is a couple that usually begin like drooping eyelids that I don't have.

I need another EMG to find out. I didn't really care to hear that either. This is a nerve test and ends up with me being poked with needles [not to mention shocked!]. I still want this tube out "now!" My humor shines through once again when I write "Am I still alive?" [I'm not sure I was actually kidding at the time!]

Later today the doctors say they think I may have something called "Chronic Inflammatory Demyelinating Polyneuropathy" or CIDP [not to be confused with lung disease called COPD].

The treatment for this one is the same as the MG so they say they're beginning treatment. I'll have one today, one tomorrow, and 3 next week. Also had another spinal tap today. More poking. They're sending my spinal fluid to Boston and Maryland for testing.

Sunday, October 31, 2010

Holy Savings Batman!

WOW. I've heard of people going to the store and paying almost nothing for their things, but it sure had never happened to me...UNTIL TODAY!

We went to get gas in the van, and then stop at Rite Aid. (I know, I know, big excitement!) All of this stuff on my table had a total sticker price of $65.37. So if you went to the store, nothing was on sale, you had no coupons, you would have paid over $65.00.

Well...I paid.....drum roll please.....


I know! Amazing! I saved $62.08. That's INSANE. Basically, I just looked at the Rite Aid ad very carefully, found some coupons online, plus a $5.00 off a $25.00 purchase on Rite Aid's website.

In their ad they had some things on sale, including hair color. It's Loreal, which I use when I do "normal" color, and they had an in-store coupon for $2.00 off, and I had an online coupon for another $2.00.

Just for transferring a prescription (you bring in the pill bottle, they call the other pharmacy, get the info and fill it) I got a $25.00 Rite Aid gift card. CRAZY! The script cost $3.80. I know some of you are shaking your head thinking, this is so stupid to write about...But I am EXCITED! I was trying really hard to get it down to zero, but I didn't quite make it. So cool though.

Anywho...that's about it...I'm headed off for a nap. I'm doing MUCH better, but I still tire out quite easily.

Oh, this is for you, Blue & White....I am completely disgusted with my GP, and will be looking for a new one. I have had to kiss a lot of frogs before I got my princes...(the good docs I have!)

SO....Hope this upcoming week brings lots of good surprises!

Saturday, October 30, 2010


I have much to be thankful for always, but these last few days have been awesome!

Thursday, my mom and sister Lori came to clean my living room and dining room. And I mean CLEAN. Like wash the curtains-wash the windows clean! What a blessing. My poor sister was already having an allergy attack BEFORE she got to my house, which is an allergen-impregnated monstrosity.

THEN, my mom took Jacob home with her to spend the night. Jacob was so excited. We were supposed to go to Ann Arbor yesterday, but I was feeling about 70%, and I didn't want to go back to about 15%, so we're waiting a week. But my mom took Jacob anyway. He had a blast.

Doug and I finally used a gift card we had from Christmas and went to the Grillhouse (for those of you not from around here, it's been featured on the Travel Channel). Then we got home and watched a movie on the big screen that we couldn't watch if Jacob had been home. Usually we have to watch these on our 7" portable DVD player in Ann Arbor!

Then Friday, Doug called to see if I wanted to go out for lunch, and to Pamida and Rite Aid (had some coupons and 2 Pamida gift certificates for $10.00 each). So we did, and what would have cost us $40.51, we paid $6.08 for. IIIII know! That's a savings of $34.43. Crazy!

So anyway. It's been a great couple of days, and between Shawn, Doug and my parents, I have been able to get the rest I needed to get over this stupid sinus infection. I was still at about 70% of my normal yesterday, but today I'm hoping for a little more. We shall see!

OH! And best of all!!! My sister's husband Phil FINALLY got a new tool and die job! He's been driving a milk tanker truck for over a year. Not great money, and NO insurance. We have been praying and praying and praying. I don't understand God's timing, but he has a job again, with insurance, and Lori and Willie will finally be able to go back to the doctor and get some much needed allergy medicine!

So....just when I get to the point where I feel God had been silent for SOOO long...He showers me and my family with blessing. Don't give up. YOUR day is coming soon.

Wednesday, October 27, 2010

You Want Me To WHAT?

So my physical therapist comes over yesterday...very sweet young lady named Katie. She knew I haven't been feeling well, so she just brought some handouts to go over on energy conservation. Oh.My.Goodness. I was like, seriously?? You want me to what?

For example, one of them is to place a folding chair in my mudroom, so that when I have to do laundry, I can sit down, and load it into the washer from a sitting position. Then, I can take the chair out again to transfer the clothes from the washer to the dryer, taking the clothes out of the dryer, and folding them in the other room, sitting again. All I could think of is, "Do you know how LONG that will take?"

Another one was to avoid bending at the waist. I'm like, well, I can't squat because my muscles will give out and I'll never get back up, so how am I supposed to pick things up? Use a grabber. Hmmm....That part I think I could do.

How do you completely rewire your brain? I am and always have been a Type A, faster is better, work harder, be-productive-keep-moving-kind-of-person. In elementary school, my favorite thing on the planet was timed tests in math. The more pressure to be fast, the better I performed. Same with my career before I had to quit. The faster I worked, the faster the work got done, the faster the trucks got out, the faster they got back, etc.

So now, I have to do just the opposite. Even when I feel GOOD, I'm supposed to work like a 90 year old so that I have the energy to do what I WANT to play with Jacob, or bake or whatever. It' stunningly difficult to reconfigure thoughts that are in your hard drive, so to speak. How does one go about changing their personality? (Without mind altering drugs....I DO have responsibilities, you know...)

But that's what's so frustrating about this dang disease. Every single day is different. I never know how much change I will wake up with. So physical therapy has to vary each day dependent upon what I can do.

It was actually nice to hear the P.T. say "If I had a patient with MS, I couldn't make them WORSE by exercising. You, I could make WORSE by exercising!" It's like, FINALLY a medical professional gets it. I have heard SO MANY TIMES (even from my closest loved ones. And I mean closest.) "If you would just try harder. Just exercise a little bit. If you dropped some weight, you know that would help."

You know what? I DO try. If I didn't TRY, and WORK at what I do, I'd be freakin' dead. As in, no longer on this planet. Try harder. Kiss my arse. YOU deal with what I have to deal with for ONE blankin' day and tell me to try harder. I had a CHILD for sh!t's sake. But I don't work at things if they're hard. Right.

And you know what else? I'd LOVE to exercise. I'd REALLY love to swim. But, oh yeah, there's just that one little thing that stops me...perhaps the flippin' HOLE IN MY NECK that would cause me to DROWN?

And yes, I completely agree with you that if I did lose weight it would probably help my overall health. I know it would. Now you just tell my body that: even though you take anti-depressants, insulin and birth control, and you can't exercise, you just drop some pounds."
Yup. I'll get right on that.

Anywho...yeah. Little sore spot there.
So anyway. I'm feeling a little better, but I brought Jacob to Shawn's this morning and it wiped me out! Resting the rest of the day after I get the bills and budget done.

Tuesday, October 26, 2010


Antibiotics are a wonderful thing. I have been down in bed, totally wiped out and SLEEPING most of the time (that NEVER happens). Last week Wednesday, Thursday, then Sunday and Monday I was in bed ALL day. Yesterday I still felt HORRIBLE. Bad enough to call the doctor and ask for an antibiotic because I was worse than when I went in the week before.

Finally figured it out...I had a sinus infection! Duh. Migraine, face pain, dizziness, then the crud...I'll spare you the details on that....suffice it to say...EEEWWW!! So the chickie I saw last Wednesday at the walk-in clinic (my local doc has a walk-in clinic every day from 5-PM which totally ROCKS), and they didn't call back to harass me or anything. Just called in the script, and in less that 4 hours! LOVE that. I even had to tell them what to write it for because there is ONE antibiotic I know I can take. I'm allergic to everything else, OR it make the MG really bad.

I tell ya, running into a doctor who LISTENS to you....priceless.

Took 2 pills yesterday, one when Doug got home with them and one before bed. Woke up this morning for the first time in 7 days NOT feeling like death warmed over. {breaking out in Hallelujah chorus}

What a relief. My gosh. It's bad enough dealing with MG, life in general, and a 4 year old, then get a sinus infectoin on top of that. Ug. HUGE thanks to Shawn for taking Jacob extra days so I could rest. You are my hero! (Heroine?)

I was a bit jumpy this morning though...bad, bad weather going through. Tornado warming, but it was just east of us. {more Hallelujah chorus} We have a high wind warning til 8 PM TOMORROW night. Doug wants to go to the Lakeshore after work; supposed to have 20 foot waves. I've never seen anything like that! We'll see.

Physical therapy is coming today at 1...I'm still pooped out, but I still wanted her to come...I'm hoping she has my new walker. That would be NICE.

Anywho...that's about enough for now....I'm just so glad to be among the living again! Not the thriving (yet) but at least the living!

Monday, October 25, 2010


I refrained from posting til now because my mood was so ugly I thought I might scare some people off. Or even scare myself. Somethings are too raw even for me to post. (I know, shocking!)

So right now I have a migraine...probably a sinus infection. I've been sick for freakin' EVER. Had pheresis 5 weeks ago; felt like crap every day since then except about 3. Then last Tuesday night got the sorest throat I've had in years. Now I have the crud. My head is about to explode.

Ya know, MOST days I appreciate still being of sound mind (although some of you who know me REALLY well may beg to differ about the "sound" part). But today I'm thinking, other than the horror for my family (which would suck), why can't I just be bat-sh!t crazy and not KNOW I'm sick?

Whatever. I'm going to eat some soup and go back to bed. Hopefully the doc will call in the ONE antibiotic I can take so I don't have to go back in and expose myself to more of the cesspool of life.

Saturday, October 23, 2010

Freaky Friday (well in this case Saturday) Follow

It is time for the Freaky Friday Follow. (Okay, so I am a day late...)

Here are the rules:
Follow both hosts (we are in spots 1 & 2)
Leave a comment so we can return the follow
Answer the questions
Grab the button
Come back and link up

Now for the questions:

1-What have you always wanted to be for Halloween?
2- Do you believe in ghosts? Why or Why not?
3-Where is the scariest place you have been?
4-Would you ever go ghost hunting?
5-Have you every visited a real haunted house/hotel? Did you get any proof that it was haunted?
6-Do you watch any of those paranormal shows on TV? (Reality or shows like ghost whisperer)
1-What have you always wanted to be for Halloween?
Nothing specific. We don't celebrate Halloween anymore. We don't make a big deal of not celebrating it...but when you understand how it got its origins, it's pretty freaky. I'd rather not mess with it.

2- Do you believe in ghosts? Why or Why not?
I believe that "ghosts" are spirits. And there are only 2 kinds of spirits: angels and demons. So if someone truly sees a ghost, they very well may be seeing one. But it's not a person-ghost. When people die (again, this is my personal Christian belief based on the Bible) they immediately either go to heaven or hell. Heaven if they believe in Christ, and confess Him as Lord, hell if they do not. (I am not condemning anyone, I am stating what the Bible says.)

3-Where is the scariest place you have been?
Probably a "haunted house" when I was in 8th grade. I was the second to last person in line, and something grabbed my friend and I had to go back and get her. It was horrible.

4-Would you ever go ghost hunting?
Absolutely, 100%, positively NEVER. Again, the Bible says that we don't fight against flesh and blood, but against principalities and powers of darkness. (Ephesians 6) There is nothing "cool", "neat" or "fun" about coming into contact with that, especially if you are seeking it out! I've had enough attacks from satan, I'm certainly not going to go out and find him.

5-Have you every visited a real haunted house/hotel? Did you get any proof that it was haunted?
Nope, nope, and nope. Again, the only way I believe a place can be "haunted" is if demons live in it. And I want NOTHING to do with that.

6-Do you watch any of those paranormal shows on TV? (Reality or shows like ghost whisperer)
Never in a million years. Why would I invite that into my home? Yes, I take this very seriously. I think many people, Christians included, do not understand the gravity of messing around in the spiritual realm. Check out this post about a speaker who was a "Christian ghosthunter."