Illness Strikes

Blah. We would so appreciate your prayers! Doug is sick...up during the night, and today is achy and has a slight temperature. I don't think it's the BAD flu, because his temp is just 100....I would think it would be higher if it was serious flu. I'm still hoping it's something he ate! I'm hosing everything down with antibacterial stuff....and PRAYING that neither Jacob or I get it. I was super exhausted yesterday, bad eyes...I was looking forward to having Doug's help today. Oh the joy of complication.

I was supposed to start book reviewing on Friday (I admit I stole the button from someone else's site, but they said I could....) but anywho. I will try next Friday, if the world has ended yet. I know, I know.....stop the llama drama! : )

Up Down Up Down Up Down

Good grief.

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

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

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

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

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

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

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

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

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

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

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

Girls Night Out

Last night Joanna and I had our Bible study Christmas party. Well, that's our story and we're sticking to it! : ) We went out for dinner to Applebee's and then shopping at Fashion Bug and WallyWorld. Yah. I know...hugely exciting. We had fun though. Til I called my husband and got chastised for shopping.

It just felt so good to be out with a girlfriend, hanging out, feeling almost normal after all of the BS we have BOTH been through. I got an awesome purse (with purple silky lining), an AMAZING sparkly black and purple shirt with purple pants, and a pair of black pants with this lacey kind of leopard print thingy (tasteful animal print)...and Joanna and I got matching necklace and earring sets because 1. they were on sale and 2. due to our love of all things purple, and 3. we're best girlfriends and love the same things! Lovely!

At Wally world I got a bunch of kitchen stuff for Doug for Christmas yet. And of course mac mac cheese for Jacob. : )

I will let Joanna tell you about the dog screaming neighbor at Applebees!!!

Random Blather

I just noticed that I'm at like 235 posts. I must have missed 200. I'll have to do some big ta-da for my 250th or something. Maybe I'll do a give-away! All 6 of you who read my blog would have a really good shot at winning!! : ) Methinks I shall have to put a plan in motion...stay tuned.

Good news: my eyes seem to be behaving. I'm running around like a crazy woman today though, so we'll have to see how long they hold up. Had to stuff the Christmas cards with our picture (yes, the WRONG ONE), find a few addresses, do Jacob's laundry, plate up 5 cookie trays for Doug's work peeps (that totalled ten dozen cookies right there!), fold three loads of laundry, keep Jacob from killing the dogs, keep Moose from killing my Christmas tree, keep myself from killing Moose, wash my hair, have to get ready yet...going out with my best "g" Joanna tonight...dinner and shopping. Woot! Woot! We need a little happy time. (Even though it's just Applebee's and Wal-Mart!) He he he. I think I had too much coffee or something. I'm a bit spastic.

Doug's a bit irritated because I bid on some auction items and WON them...and he has to go to Kalamazoo to pick them up. Nevermind two of them are for him!....the lawnchair with a toilet seat is mine...I will NOT go on the ground, or, God forbid, an outhouse. So, if we go camping, (No comment from the peanut gallery!) I will have a throne. Of sorts. I guess I'll just have to put it at the top of a hill. (They have awesome auctions on Biddergy.com...today there are some Coach purses. I haven't dared look at what they're going for. )

Anyway....just jotting off a note before I continue my mad dash to have Jacob ready at 3:30 and me ready by 4:15. Oh, and yesterday was Ann Arbor, can you believe it? Treatment went GREAT...one poke in each arm, NO problems, no veins collapsing, NO pain...and I ran reaaallly fast. SWEET!!

Ya'll have a good one!

What a weekend.

Busy busy busy. Exhaustion. Pain. Stress. Ug. Trach....ug. Can't even describe. Eyes are a BIT better---Halleljuah for that!

Saturday we went to Costco. Again, this is a love/hate relationship for me. I LOVE LOVE LOVE Costco. The problem is, I love it toooo much. Ergo the hate part. My checkbook hates it. Thank God you can't use credit cards there, or I'd be in the poorhouse all from Costco purchases. They have EVERYTHING! I swear they pump the air full of some kind of pheromone that makes you NEED to buy things....

I ALWAYS use the Costco photo department. Well, Saturday there was a new guy there. I had a coupon for 50 free prints...perfect! That's about what I needed for my Christmas pictures to send out with cards. Awesome! Well, AFTER we got home, I realized that he didn't take the coupon off. I gave it to him, and I saw him writing on it, but he didn't use it!! Now I have to call them. UG. I had several other pictures to get (surprise, surprise, I know!) so I didn't really pay attention. Mistake number one. Mistake number two: I selected 50 of the WRONG pose from our Christmas pics. It's an okay picture, but it's not as nice as the one I wanted, and I am IRRITATED. That's what happens when you're too freakin' tired to know your own name.

Then my sister and her family came over for supper, and I made (from scratch thank you very much) chicken and dumplings, which, if I do say so myself, were amazing. I made two 9 x 13 pans, and it was ALL scarfed up. DANG!

So after that day, I was freakin' pooped. I fell asleep watching TV. That NEVER happens. It was so nice to just hang out with my sister though....she got me THE coolest earrings...she works at a retail clothing store, and gets a decent discount, plus they were on sale...anywho...they're long and delicate and have purple beads. Purple, is, of course, THE best color on the planet.

Sunday, after that marathon Saturday, I actually made it to church! WHo--hoooo!!! That's like twice in 4 weeks! Ended up bawling my eyes out to a very kind elder over a friend of mine who is hurting very badly, and having all kinds of problems...being attacked by the stupid devil like there's no end in sight. Asking for prayer for them...the guy grabs like 4 different people who are heads of this ministry and that ministry, the prayer leader, etc., and this friend has been there TWICE...and I've only been there like 5 times. This church (The River in Allegan) is AMAZING. This is the one that has the pastor that I've known since I was 8...he is a counselor there now. And the church consists of probably 100-150 people. It's not like it's some huge mega-church.

They were swearing in elders yesterday...it was just a cool place to be. I must have talked to these folks for an hour...Keith, Shelly, Ann, Gwen, and Kathy...THANK YOU. They all committed to praying for my friend and her family. It was just so neat to see all these people IMMEDIATELY want to help and step in. What a living, breathing picture of Christ in action.

And to my friend, who knows who she is: God is bigger than all this. He WILL see that all this works for your GOOD. I do not know how. But I know that I know, that I know that I KNOW He loves you and is GOING to help you through this. I love you so much, and I would do anything to help you....but I am so helpless. I can and will continue to lift you to our MIGHTY GOD, Who parted the Red Sea, who rose Christ from the dead....He IS ABLE to do immeasurable more than ALL we ask or imagine...I am claiming victory for you through the blood of Jesus!
If you need ANYTHING, call me day or night. I love you!!

Chronic Living

For my type of Myasthenia Gravis (MuSK+), there really isn't remission. Many people with AChR+ MG can have a thymectomy, and boom, remission. Not all, certainly, but a lot. Others go into medically induced remission; they are on medication for a certain period of time, and then can back off of it and still be okay.

I HATE the word chronic. Listen (well, read!) this: Chronic: persistent, constant, continual, incessant, unabating, lingering, lasting, enduring, perpetual, eternal, permanent, ceaseless, endless.

This is where choice comes in. This is the world's definition. Although it can be true, it doesn't mean it's absolute truth. Asolute truth is that because Jesus paid the price for my sin, I will live eternally (chronically, if you will!) in heaven. And in heaven, there is no pain. No more tears. No trach. No arthritis. No diabetes. No scarred vocal cords. None of it. It will all fall away. Oh, glory, I cannot WAIT!!!

In the meantime, I struggle! I will be the first to admit it. Just yesterday, I was flippin' out because, barring God's complete healing here on earth, I have to deal with this BS disease every.single.minute.of.every.single.day. And I get angry. I get really, really ticked off. I can shake my fists and stomp my feet and hold my breath and have a good old fashioned tantrum, but it does no good. I'll still be sick. Sure, maybe I feel better for a while, and I'm not taking away from a good ol cry, because that can be very cathartic.

I'm having trouble with my trach. It's not staying in all the way, but it's not like, popping out either. It just slightly moves forward, and rubs on my natural, God-given trachea, while at the same time narrowing my airway. That doesn't feel so good. Then the outside gets all raw and irritated as well. I'm not sure how to fix it, and I don't really want to go to the doctor right now, because he'll probably just say, "It will toughen up." That's his answer for everything. Or he'll tell me I have to take it in and out more often, which at this moment in time would be excruciating. It's really hard to cause yourself pain on purpose. Seriously!

I'm having trouble with my eyes. These two syptoms, the trach and the eyes, are the two WORST. So exhausting. So draining. The pain, the double vision, headaches. Okay now it just sounds like I'm whining...I'm REALLY trying not to... My point is that if I concentrated on this every day, I would be a nutjob. (As my sister would say, bat sh!# crazy!) I have a life to live. I am a mom. I am a wife. I am a friend.

I can't be all of these things at once, and while it makes me insane, there's nothing I can do about it. Because when I try, I either end up like I am now, with double vision and completely exhausted, or worse yet, in the hospital. I just wish I could get across how difficult it is to accept limitation. Even after 10 years. Even after being almost dead more than once. Even after being in a wheelchair for a while.

Most of you didn't know me "before." Some did...but yesterday as I'm having my little melt-down, I just stopped and said, "I can't believe this is my life!" While I wouldn't trade it for ANYTHING, I still struggle. I'm human. I remember the days of freedom and independence, of productivity and doing for others. Now, that's all pretty much gone.

So....I'm going to re-read all the definitions of chronic, and apply them to love. God's love for us all is ALL of those words. And I'm going to try to have my love for others to be the same. A challenge, for sure, but it's better than applying all those "permanent" terms to my health!

If you are struggling with chronic illness, if you have found a way to accept or cope, please leave a comment or e-mail me. We need to stick together! Even if you're NOT dealing with a chronic illness... Is there something YOU'VE had to accept that has been really, really tough?

Thanks for reading! God Bless!!

Christmas Cookie Swap

Kara is having a Christmas cookie swap!! It starts at 4:00 PM (PST...so 7:00PM EST) today.

You can click the button on my sidebar to get there.

Here is the EASIEST Christmas cut out cookie recipe ever. My husband has been making these for years before we got married, and we make them every year.

INGREDIENTS:

1 cup butter or margarine, softened (I actually use 1 stick of each)

1 cup sugar

1 large egg

1 tsp vanilla

2 tsp baking powder

3 cups flour

Preheat oven to 400. In a large bowl, combine butter and sugar with an electric mixer. Beat in egg and vanilla. Add baking powder and flour one cup at a time, mixing after each addition. The dough will be very stiff; does NOT need to chill.

Roll out on floured board for cutouts. Bake for 6-7 minutes.

I use canned frosting to frost them, or just sprinkle colored sugar on them BEFORE you bake them. They're super easy and super yummy!