Thursday, May 28, 2009

Blessed are the Cracked Pots....

....for they are the ones who let in the Light.

Oh do I feel cracked today. I'm tired. I'm irritated. My eyes are all messed up. Already. I haven't seen my husband for more than 4 hours in the last 2 days...I've been hotter than you know what.

BUT. I'm NOT going to let that %$#%*!!# devil get me down. I'm trying anyway...fightin' hard.

Please pray for patience for me with Jacob. He is SO busy. Wants to physically interact ALL the time. It's just tough. I'm exhausted. Going to Ann Arbor for pheresis tomorrow...please pray it goes better than last time!! I think the last treatment actually made me worse because I was so stressed out. The girl who "normally" does my treatment, Dawn, is back tomorrow, so hopefully that will mean good things. (Pray for Dawn too!) : )

SO: Even though I'd rather complain and cry and feel sorry for myself (which I do frequently!),

1. I am thankful that my husband HAS a job.
2. I am thankful we can pay our bills.
3. I am thankful that my brother is coming out from California.
4. I am thankful that my son is perfectly healthy and full of energy!
5. I am thankful for lots of land for Jacob to run around on to chase the ducks and chickens.
6. I am thankful for my computer, which helps to keep my sanity!
7. I am thankful for friends who pray for me.
8. I am thankful for parents who will be celebrating their 50th anniversary next week.
9. I am thankful that even though I have double vision, I can still see.
10. I am thankful that I SLEPT ALL NIGHT LONG LAST NIGHT for the first time in about a week!

"O Nebuchadnezzar, we do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace {if we are afflicted with an illness, if we lose our jobs, if we have to live with the consequences of a decision someone else made for us, if we suffer an injury or experience big trouble} the God we serve is able to save us from it, and He will rescue us from your hand O king. BUT EVEN IF He does not, we want you to know, O king, that we will not serve your gods {or bicker and complain, or turn our back on God, or badmouth people or circumstances in our lives} or worship the image of gold you have set up." Daniel 3:16-18 {with a little extra from me}.

Let me encourage you today to live an "EVEN IF" life. I strive for this daily, and though I fail more often than I succeed, I will continue to strive for it.

Tuesday, May 26, 2009

Stinkin' MG Monster

First of all, Happy Belated Memorial Day....I did so on facebook, but not on my blog yet: Thank you to all of our service men and women who are currently serving our beloved those who have gone before you, the veterans, and to those who gave their lives. For those POW's and those who have never been found, God bless your families, and thank you for your sacrifice.

The MG is kicking my butt lately. Man. I don't quite understand. It's so frustrating, because it's so UNPREDICTABLE. I'm having symptoms I haven't had in having trouble holding my head up. I'm getting a stiff neck from the strain of holding my own head up (my sister said that must be where Jacbob gets his big ol noggin from....I said, Big head, Big brain!!). I had a super stiff neck before I was hospitalized in 2000...and had to lean on the table with my arm and hold my head much so that I damaged my ulner nerve. The docs had no idea if it would come back...but Halellujah it did! The docs are STILL amazed at how much I got back from what I had lost...including muscle atrophy, which is usually permanent. Again, Glory to God. I'll never forget the day when the head of the neuro-muscular clinic at the time said, "It has to be a miracle. There is no other explanation." And he was a bit puzzled. I just smiled.

I'm also having weak leg issues. I can't walk from the chicken coop to the house. It's crazy. I think the last treatment I had was pretty much a big ol waste of time...if anything, it made me worse because of how stressful it was!

Other stress going on mom hasn't had her medication is almost 3 months and is starting to show symptoms of the acromegaly...loooong story. She was trying to get financial help as the medication is over $4000.00 a MONTH. Her CO-PAY is $2000.00 for the first month. Ug. My poor mom and dad have been working their 70 year old butts off at the greenhouse that they re-inherited because the guy they sold it to went bankrupt. Because of the heavy snow, they were crushed, all the roofs fell in...what a mess. And Larry was nice enough to leave about 800 hanging baskets with dead plants in them that have to come down in order for the hoop houses to be sold. Nice. Thanks, Lar.

There have been issues with my brother in California...he and his family were all here about 2 years ago, and before that it was my wedding in 2001, and that was just my brother and the oldest 2 kids. It was SO important to my mom that he come, and my sisters had pretty much written him off, thinking he had written US off, so of course I got out my mouth and sent him an my completely diplomatic, tactful, non-direct way. (Yes, I can take your boots off now, I"ll stop.) Made for some bad feelings for a little while, but he IS coming for 10 days, and I know darn well he wouldn't be if I hadn't said anything. So if I have to be the sacrificial lamb for the happiness of my mom, so be it. I'll get over it.

So. Hope you're all doing better than I am! We go to Ann Arbor this Friday...(oh, and we brought the car back to the transmission shop for the THIRD's still leaking). Any prayers you offer are much appreciated!

Thursday, May 21, 2009

I know I cannot get through this day without the Lord. Ooh do I need strength today. Jacob didn't get to bed til 11:00 last night! Daddy took him to Grandpa and Grandma's house in Wayland, and I went out with Joanna (hallelujah for that!) Doug and Jacob didn't get HOME until after 9:30. Ug. Then of course he still needed a bath, and Doug had chores to do, and then American Idol was already DONE but we still had to see who won...I wanted to just fast forward, but of course we couldn't, because then we'd miss something and I was like, back up! Back up! (Oh, and by the way, KISS needs to disband and go to old folks' homes or something. Doug said the reminded him of the Doodlebops. I said, from hell maybe!)

So Jacob's feet hit the floor running this morning...and he's a liiiiiitle crabby. He wants to go play outside and I can barely walk. It's gonna be a looooong day. Doug's in Grand Rapids taking his Class A test for work, and our car is still in the shop. Nothing like feeling trapped.

My MG is NOT cooperating at all. I'm not sure what the deal treatment Friday seems to have been a complete waste of time, in fact, if anything, I'm WORSE than I was before it. My legs are so weak that I can't walk from the chicken coop to the house without stopping. It's like I start walking, and halfway there I have to stop because it's like the muscles just stop working. They get weak and shaky, and if I didn't stop, I'd probably fall down.

Last night at McDonalds with Joanna we got ice cream. I was already getting really tired, and just starting to have some trouble speakly clearly. The ice cream did NOT help. We were cracking up because I sounded likeI was three sheets to the wind. I was like, can you imagine if I was driving and got pulled over? The cop would think I was drunker than a skunk. So then we proceeded to discuss how I could do a breathalizer since I breathe through my trach, and can't blow out my mouth.....I know...we digress.....

I literally have a card in my purse saying, "I am not drunk, I have myasthenia gravis." And it goes on to list the symptoms. Joanna wondered how many shady characters might want to get their hands on a card like that! : ) It was pretty funny though, I could barely talk, and for some reason it struck us both right on the funny bone....people stared a bit...but whatever. It was hilarious. seems like I'm stalling out in the "making progress" category with the MG. Prayers, as always, are deeply appreciated. Heat doesn't help, stress doesn't help, allergies don't help... But we WILL get through this!!!! Thank you for your love and support!!!

Wednesday, May 20, 2009

A Quick Funny

I read this the other day and laughed outloud. It's probably lame and corny, but it made me laugh! And who couldn't use a good laugh! Oh, and check out Bugs in my Teeth today, Joanna's blog...there's a link on my sidebar. HILARIOUS!

Joe and Bob worked at a cemetary and were on their way to dig a new grave. Joe was a newer employee. While they were walking, they heard Beethoven's third symphony being played backwards. Joe looked a bit quizzically at Bob but said nothing. As they walked on, they heard Beethoven's second symphony being played backwards, and then his first. Joe finally says, "What's up with the music?

"Oh, that?" asked Bob. "That's just Beethoven decomposing."

He he he he he

Have a good day!!

Tuesday, May 19, 2009

My 100th Post!

Wow...100 posts. It took a while, but I got here! I could try to do the "100 things" like Joanna did....but I'd be here all day. Just know I'm thankful for this outlet, I'm thankful for my friends who read it and comment on it, who encourage me, and pray for me. I could not make it without you!

I'd like to tell you about my friend Mary. She is an amazing woman. I went to college with her, and have recently re-connected with her on facebook. Mary was an education major, like me. She was, I think, a year ahead of me. She has always been a beautiful, shining example of God's love...

I can't remember if it was my freshman or sophomore year. Mary was riding in a car with a friend and got into a horrible accident. I don't even know the details. All I know is that she nearly died. She was in the hospital for a long time, and had head injuries, and was paralyzed for some time. I remember the first time I saw Mary walking through the cafeteria with her walker. I though, WHOA. There is a strong person. She had to work to get her speech back, and to walk on her own. I don't know all the details; we became closer friends the following year when we had classes together.

Mary graduated from college with a teaching degree. I see her on facebook, and she is always praising God, and has an amazing attitude. She is TRULY the most positive person I know. She is such an inspiration. I asked her the other day if she EVER gets grumpy. And she said, yes, but I quickly adjust my attitude. Life is too short and can change in an instant. I don't have time to be a "grump-butt."

So I have learned much from Mary. Most importantly, praise God every chance you get. She, like Mary the sister of Martha, chooses each day what is sit at the feet of Jesus.

Live every moment, every day, like it was your last.

Enjoy your loved ones.

And of course, don't be a grump-butt! (I am working on that one!!)

God bless ya, Mary!

And here's one of my own:

Always take time to smell the roses!

Monday, May 18, 2009

At Least The Sun is Shining....

Not much to report. Crappy weekend. Felt awful Saturday. Felt pretty gnarly Sunday too.

Why is it that the people closest to you can seem so far away?

Saturday, May 16, 2009

The Joy of Ann Arbor

Well the good news is that the car made it to Ann Arbor. The kinda bad news is that it's still leaking a little transmission fluid. The really bad news is that the treatment was awful and took forever.

Normally it takes about an hour and 15 minutes. Yesterday it was almost 3 hours. Try laying perfectly still with your arms outstretched, thick-as-fork-tong-metal needles in each arm, nerve pain from previous attempt at vein-finding, and not being able to speak. Yah. Panic waiting to happen.

First of all we have to take a detour around the detour for I-94. We saw last minute before going out the door that the detour was just a nightmare, and being were being delayed hours not minutes. So we pulled out Ye Olde Michigan map, and found our own way. So instead of getting to the U of M around 12:30, it was closer to 1:00 (my actualy appointment time). Then there were only 2 lanes of the parking tower open, and some of the levels were closed. Drove forever to find a spot.

Then the needle issues...just not a stellar day in pheresis land. And it was again, one of the most experienced nurses. She thinks that the vein they usually use in my right arm has a scar tissue bubble in it, and if we leave it alone for a while it might dissolve and we can use that one again. In the meantime they have to try my hand (which blew this time) or a different vein with another metal needle...guess it doesn't matter much to me...whatever. Now my whole body is in pain from being tense yesterday, and it hurts everywhere. And just thing, I to have this done every 2-3 weeks for the rest of my life! And Doug is in a crabby mood and out building the chicken coop. Hope he doesn't hurt his back again or we're going to have to enter the old folks home.

I think I'm just going to feed Jacob and go back to bed.

Tuesday, May 12, 2009

Has Anyone Seen My Sanity??'s the recap of my weekend:

First of all, I was supposed to go to Ann Arbor on Friday. We get almost to Battle Creek, and smoke starts pouring out from underneath our car. We knew we had a TEENY transmission leak, but it had been fine. Um, not so much anymore. So I'm like, "Could that start on fire?" Doug's like, "It shouldn't." I'm like, WRONG ANSWER! So we pull over and let the car cool down. I call pheresis to cancel, and then call my mom to tell her what was up. We look at the receipt from the brand new transmission we had put in last summer, and find we are 1,000 miles over the warranty. Of COURSE! We get to Allegan Transmission, and Tom says, bring it in next Tuesday. Doug shows him the warranty slip, and Tom says, "That's fine...we'll take care of it." GOD BLESS TOM!!! If you live around here and need transmission work, go see him!! We took back roads home, and no more smoke. So apparently it will only start on fire over 60 mph.

Saturday morning at 7 AM the phone rings. I am downstairs. I'm like, this can't be good. No one calls on a Saturday morning at 7 AM unless something is wrong. "Hello?" It's Doug, on his cell phone, upstairs. "I need help. I can't get out of bed!"

Um, seriously? Yup. It's his back. He can barely move. I get upstairs, we try very hard to get him to the potty, can't make it. Goes back to bed. Jacob gets up, I'm panicking, thinking, where am I going to find a chiropractor open on Saturday? How am I going to take care of Jacob and Doug? I can't DO this!

I call Shawn, hysterical, she comes to get Jacob. She comes in, I throw myself at her bawling, and say "I can't do this!" And she very calmly says, "Yes, you can. You can do all things through Christ who gives you strength." I was like, Go Shawn! She took Jacob, bless her heart, and I calmed down a little. One down, one to go. I start calling chiropractors, not getting anywhere. I see a couple in Portage, but with the car the way it is, I don't want to drive all the way to Portage. I finally see one in Plainwell, call, and they're open. I almost bawl. We make an appointment for 11:15, but they are very busy so we may have to wait.

It took us 45 minutes to get Doug out of bed, dressed, and down the stairs. We made it to Plainwell, and he felt much better after the treatment, but could still barely walk. So I had to do everything around he that he usually does: feed and water the chickens, ducks and turkeys, (which doesn't sound like much if you're healthy) take care of him walk, get all the meals, dishes, not to mention taking care ofJacob 100% (after we got him from Shawn). I was so exhausted.

Sunday...same thing. Doug can barely walk. We decide to go back to Plainwell Monday morning. But we had to get through today first...Mother's Day. I drove to the store to get rotissiere chickens because they were on sale, and then I wouldn't have to cook! My mom had brought a huge thing of lasagna for Friday night, so we were set for food. I think the highlight of my Mother's Day was when Doug swatted Jacob on the diaper (barely touched him) for messing with the dogs, and Jacob ran to me crying. "I don't like it when Daddy spanks me," he said. "I'm going to run away!" Well, Happy Mother's Day to me! I was at LEAST four before I packed my suitcase for the first time!

Monday Joanna and boys came over to watch Jacob while we went to the chiro. again. They ran him ragged, bless their hearts. And Joanna vacumed!!!! Oh, BLESS you woman. Vacuming can be difficult for me, and I was seriously wondering how the heck I was going to get it done seeing as how exhausted I was. We had pizza for lunch and then Jacob and I took a nap. I crashed for a solid 90 minutes. By Monday night chore time, Doug was helping a lot, and I was bawling a lot. I had totally reached the end. Talk about walking dead.

Doug went to work today...he's moving MUCH better...I told him he better be careful! He also will be bringing the car in for the transmission. Who know how long that will take!

Thanks to all for the prayers...and please continue to do so. Again, anyone needing proof that God exists, come see me. I would literally, not in any physical way possible, be able to do what I did over the past 4 days without the strength of the Almighty.

Wednesday, May 6, 2009

One of THOSE Days

Remember two days ago I said I wouldn't change anything, but on my really, really, bad days I question it? Well.....color me questioning. I just need to put down some of my random thoughts, because it does help me refocus, eventually. I have to get it out so that it doesn't stay inside me, polluting what progress I've made. So if you want to skip this part, feel free!

When I see people riding bikes past my house, their laughter being carried across the wind to my ears, I am jealous.

When I hear people making plans about going here or there, this social event or that movie, the camping trip, the vacation to the mountains, the family outing to see the relative across the country, when I see people on TV zooming across the lake on boats, or playing at the beach with their kids, I hurt.

When I see people taking their children for granted, their ability to play with them whenever they want, their ability to run around with them and play outside for hours on end, I'm angry.

When I see people taking their health for granted, I get even more angry.

I think about this stupid flu outbreak and just in general how careful I have to be about getting sick, and I feel like I'm living in a bubble. I feel isolated.

When people who don't know me very well tell me that everything will be alright, and that it will get better, I just have to keep a positive attitude, and think positive, I want to just scream at them, "YOU DON'T GET IT!"

This isn't a cold I will get over. This isn't a temporary condition. I have a chronic illness that will never go away unless God chooses to heal me, or they come up with a cure. I deal with this every. single. day. I won't wake up and have it gone. Most of the time I can deal with that, but these last couple of days have been tough. I feel like crap. The MG, my trach is hurting, which makes my whole neck and ears hurt, and I just have to deal with it. My life motto. Deal with it.

My husband is so busy he was home for all of about 4 hours yesterday, 2 of which Jacob and I were laying down. Jacob because he was taking a nap, I because I couldn't stand up any longer.

I CANNOT DO THIS ALONE. No one really seems to get that. Not even my husband. Yes, I know God is with me. But to be frank, God isn't here in my home to pick up my child and change his diaper, or play with him when I can't, or run outside with him and play ball. You can't imagine what it feels like to have these big, beautiful, innocent eyes look up at you like you're perfect, and say, "Play catch outside, Mommy?" And I just bawl. Because I can barely keep my head above water, and I'm disappointing my son.

Yes, I believe that My Redeemer Lives. Yes, I believe that one day I will be in heaven, for eternity, and be whole. There will be no more crying. No more pain. No more tears. Oh, glory I can't wait for that one. No more tears. Sometimes I think I can't POSSIBLY have any more in there, and yet they flow like a raging river. Dear God PLEASE help me.

Monday, May 4, 2009

Loss Comes In Many Forms

When I used to think about loss, really only 2 things came to mind....losing things, like your keys (or your mind : ) or death. When I started living with a chronic illness, I learned about a whole new kind of loss. Or rather, how MANY things can be lost that aren't "things" at all...

My ability to be independent. Ouch. That was a killer for me. As I started gaining strength, I was assuming my life would be going back to normal. Uh, not so much. Doug could obviously see this, but all I could think of was getting back to work. Doug was like, um, honey, I don't think so. We even talked to our pastor at the time because we would argue so much over it. Doug was right of course. (See, I can easily say that because he never reads my blog!) But really, he was. I loved my job SO mcuh. Probably a little TOO much. I loved the pressure, the stress, and to be completely frank, the power and money. I was good at my job, really good, and it felt awesome to have other people recognize me and reward me for that. But it became my focus. I was on call 24/7. Cell phone, beeper, tethered. Losing my job (even though it was voluntary) was one of the hardest things I even went through.

Along with the loss of independence is the social aspect of life. I'm one of the most outgoing people you'd meet. I LOVE people. I love being around people. If I could do anything in the world at any time I would have everyone I love around me all the time. I love going out and hanging out with my friends. Going to movies. Going dancing. Going out for lunch whenever and with whomever. Now I can't. Now I have to wait for a good day. I have to be careful of public places and too many germs because of my suppressed immune systems. This loss hurt me deeply, and hurts me still.

My ability to sing. This was (and still is) THE hardest thing. It can bring me to tears even to this day, and it's been almost 9 years. I used to sing. At weddings. I sang in a quartet in college, and I loved it more than anything I had ever done. I would sing the car, in the shower...I always had music on and I was always singing. After I had the trach put in initially, I had NO VOICE at all for four months. If you know me personally, you can only imagine the torture that was for me.

I remember going to the ENT one time and he suggested an operation that may help me get rid of the trach, something called a vocal cordotomy. They would cut a notch out of one of my vocal cords and hopefully it would fold back and open my airway so I could breathe better. I asked if it would affect my voice, and he said yes. I asked if I would ever sing again, and he said no. I just broke down. This couldn't be happening! How could God take away the ONE THING I loved about me and even more so, my ability to praise Him with my voice? What if I ever had a child? How could I sing him to sleep? The pain this caused was more than I could bear. Or so I thought.

I was thankful that my vocal cords were paralyzed in the closed position, so at least I had a voice, after all the swelling went down and stuff. If they had been paralyzed open, I would have run the risk of aspirating everything into my lungs, and could have very easily gotten pneumonia and died. My voice is certainly nothing like it used to be, but I can sing a little bit. Instead of a range of a couple of octaves, I have a range of a couple of notes! But it's better than nothing, which I had for a looooong time.

I read a book which ministered to me greatly. It is called the Blessing of Brokenness by Charles Stanley. It's not terribly long, and it's worth every word to read....Wow. Life changing. Really. God loves us too much to leave us where we are, and He will DO or USE anything that may happen in our lives to bring us closer to Him.

I've said this before, and I suppose I question it on my really, really bad days, but if I had it to do all over again, I wouldn't change what happened. I am a much better person now. I don't have nearly as many bad habits...(EVERYONE has something!) : ) I'm much closer to God and to my family. I appreciate EVERY good day. I appreciate all the amazing gifts and abilities my terrific husband has, and how much he loves me, and how much I love him. He is truly God's gift to me. My son means more to me than anything because of what it took to have him! Oswald Chambers said, "A thing is worth just what it costs." Well, Jacob almost cost me my life, and he is the most precious thing in the world to me.

If you are where I WAS....wondering why this could happen to you....wondering why this DID happen to you....please know you are not alone. God LOVES you. He loves you so much that He will put you over that open flame to purify you....but in the process, He NEVER takes His eyes off you. Not even for a second. He leaves you there JUST long enough, and not a second more. But not a second less, either.

Sunday, May 3, 2009

I just typed my whole post and it disappeared. Ug.

I'm uploading a picture of my niece, Jessica, who is getting married in December. Technically, she's already married, so I should say her wedding is in December. Doug and I did the same thing. We got married in the church narthex in August of 2000, then had the big church wedding almost one year to the day later. We were both totally ready to be married, I had quit my job because I was so sick...getting on his insurance was SUCH a God-thing because I was in the hospital 6 weeks later, and I would have been paying for COBRA and had crappy insurance!

Jess and Daniel got married because they needed to be legally married before they could apply for military housing. He comes home (originally Georgia, but he'll be going to Kansas) in October, and if they waited until December to apply, there may not be anything available immediately. So they'd have no place to live!

Isn't she beautiful?? Oh, you can see my new glasses too. I look so old next to her!

Jessie's leaving to go to Georgia to get Daniel's things, and taking them to Kansas, where they will be living. (Every tornado season will find my family praying more than usual!!) Then she'll come back home and the Army will come up and get her stuff and take it to Kansas. They'll only move once, and she has waaaaay more stuff than her hubby, so they are coming here. Then she'll be in Kansas, living on a military base. Where has the time gone! I still remember Jessie at about 4 years old. She's permanently etched in my mind at that age...I remember going off to college when she was about 18 months old, and it was terrible. I missed her so much.

Anyway...the shower was very nice, and it was wonderful to just hang out with my sisters, nieces, mom and Aunt Dee. I love you all!!