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!