Wednesday, April 29, 2009

Blissfully Uneventful

I never thought I'd be happy with uneventful. When I was healthy, I couldn't pack enough into a day, a week, a month. I would be on the go continuously, and loving it! I worked a TON, worked hard and played hard. I couldn't stand being still or bored for one second!

While I still hate being bored, I cannot express how joyful it is for me to say that the last 3 days have been almost COMPLETELY uneventful...no sickness, no appointments, just kind of peaceful existence. I can't BELIEVE that makes me happy! (Although I am EXTREMELY looking forward to Bible Study tomorrow!)

Doug is still fighting some kind of cold or allergy issues...and he is under a LOT of stress at work with this expansion going on. It's like a $10 million project, and since he is the superintendent (the boss) a lot falls on his shoulders as far as approving the work, getting money he needs from the state, approval from city council, etc. If you could all keep him in your prayers, that would be great. Not to mention the fact that he has me....(which is a blessing and a chore!) to worry about, Jacob, the animals...lots of projects for spring...Not to mention my mother-in-law got second degree burns from boiling water last Saturday! (Her name is Pat, if you could pray for her too!) His plate is very very full. So please pray for peace, and enough time for him to NON-stressfully get what he needs to get done.

Hope you are all having good, PEACEFUL days!

Tuesday, April 28, 2009

Swine Flu??

Okay. I'm trying to be calm. For those of you who know me well, you know I have a thing about germs. Part of me always HAS had a problem, but now I NEED to be extra careful because of my medical...challenges. : ) So the WHO and the CDC are talking pandemic...which I know are supposed to occur 3 times every century, and the last one in 1968 or whatever a million people died as opposed to 50 million in the pandemic of 1918.

I guess I just urge everyone to be extra careful, wash your hands a LOT, and stay away from sick people! Seriously, Doug's cousin is married to a man who works for Homeland Security, and he sent her an e-mail from work telling her to stay out of public places, and to stay home. They live in Texas, so I think their risk may be higher.

I don't want to be labelled an alarmist, but I think this thing is serious. It's spreading, and there have been cases in Michigan now. Including Allegan county. PLEASE be careful. There is a saying that I think is appropriate for such a time as this: Trust God, but continue to row the boat. In other words, we DO need to put our trust in God as He is the ultimate source of Life, but we can be practical about taking care of ourselves as well. Just my two cents. (Or maybe three....) : )

Sunday, April 26, 2009

What a message!

Last night at InTents Life Ministries we had a jaw-dropper for a service. First of all, praise and worship was amazing, as usual. Almost as "InTents" as Thursday morning. (hehehe) Thursday at Bible study I was literally stomping my feet. Maybe there's a little pentecostal in there somewhere! It was just overwhelming. Amazing. Talk about the presence of God. WHOA.

Anyway...last night's message: Our main priority as children of God and members of His body is to reconcile. We have to not worry about being right, but about being true to the Word of God. EVEN IF you have been wronged. EVEN IF you ARE right. EVEN IF the person on the other end is continually "being mean" to you for lack of a better term. Our job is to go to that person, and ask for forgiveness for OUR part of the mess, and then come back together as friends.

Waaaait a minute here....I had all that down EXCEPT for the last part. I thought if you forgave, truly in your heart forgave, and did not have any ill will toward a person, that was enough. That you certainly didn't have to get back in relationship with that person! But according to God, it is not enough. We shouldn't forgive and then put up a 2 foot thick plexiglass wall to keep that person at bay. Pastor Dave said, "Can you imagine if the whole church worked on this simultaneously? It would hasten the arrival of the Lord Jesus because He wants to come back to a church without stain or blemish." Now of course, the church will never be perfect, and we KNOW that Jesus IS coming back...but imagine the POWER the church could have if we could stop worrying about who is RIGHT and start coming together as one! Can I get an AMEN??? IF the church, all memebers and denominations, all people of God, would live in true reconcilation with one another...no judging. No competition. No keeping up with the Joneses, materially OR spiritually. The POWER that the church would have then....we WOULD defeat the gates of hell!

I'm not talking praying for "unity;" as Pastor Dave pointed out, many times this is just a way to avoid and not deal with the true problems in the church. Pray for unity, and we'll be unified. Not necessarily so. Pray for reconciliation! Between friends! Bewteen pastor and church member! Between husband and wife! Betweeen demonimational lines! There are MANY things we will not agree on with others....but that doesn't mean they are not saved! There are what Pastor Dave would call "disputable matters" i.e. sprinkling or immersion in baptism. Adult or infant. Ya know, topics like these have seriously caused problems among believers! If someone was more concerned about being RIGHT than being true to God's whole Word....do you see what I'm saying here? If it's not a salvation issue, LET IT GO.

I'm all about hastening the arrival of the Lord Jesus, so I for one, know I have some e-mails to write, some apologies to make, and some reconciliation to do. Church, I BEG you....do the same. You know there is someone you are thinking of right now...maybe they really hurt you. Maybe they did do something wrong...maybe you ARE right about this specific thing....but in 5 years from now is it really going to matter? And how about in eternity??

Wednesday, April 22, 2009

Back to Reality?

Okay so yesterday here's some of what I did:
{crickets chirping}

Sat on the couch.
Managed to feed my child a couple of times.
Went to the eye doctor and got some bodacious glasses. Very dramatic.
Went out for dinner with my husband because my niece, God bless her, was here cleaning my house (I paid her, don't worry, cuz she worked her tail off), said, I'm here, I'll watch Jacob, you go out for dinner with Uncle Doug for some "aloooone time!" She said it so cute...she is only 20 and just recently married to a young soldier in Iraq...Daniel).

So yah. Back to reality, and I probably DID overdo it on Monday...but like I said, when I feel good, I just go flat out til I can't go no mo'! : ) So Tuesday, "go no mo'" I did!

So today my sister Lori is coming to visit, tomorrow is Bible study and lunch with Joanna, and Friday is Ann Arbor. Even with the hideous needles, this week is turning out to be fabulous!

Again, many thanks to those who faithfully life me up in prayer. Heck, even to those who have ever prayed for me at all!...I am so appreciate of you all I can't even tell you. God is working in my life, for sure...it's not always a pleasant road, but I just HAVE to keep my eyes on the destination!

Look at the Water Walker, not the Wind and Waves!!
Have a TERRIFIC day.

Tuesday, April 21, 2009

I Will Never Understand This Disease!!!!

Okay, so yesterday here are SOME of the things I did:
Folded 3 loads of laundry.
Washed and folded Jacob's laundry.
Boxed up 5 boxes for a garage sale.
Gave Jacob a bath.
Took a shower.

THAT JUST DOESN'T HAPPEN IN ONE DAY IN MY LIFE!!

And that was all after an entire day out Sunday. That's the nature of this beast. (MG) No predictability! And can I just admit that I LOVE predictability? I CRAVE it! And who says God doesn't have a sense of humor!! After Sunday, I should have been wiped out Monday. But no! And sometimes, I will be fine one minute, and practically fall down the next.

I guess that's why I've decided that when I feel good, I'm going to go til I stop, ya know? I'm not sure if that's what's BEST for me...but as long as I'm getting my rest...I think what's helped a TON (other than all of you praying for me!) is that both Jacob and I slept really well the last 2 nights. He wasn't up coughing all night, Hallelujah!

Check out on my side bar Dinner with the King....you have to read the last couple of posts. God is doing a work in so many, and as Leigh commented on Crista's post, suffering isn't a popular message, but friends, it is an important one...Thank you Crista for sharing such powerful words!

Monday, April 20, 2009

Roller Coaster??

Okay, so I think everyone has heard and probably even used the old cliche "life is like a roller coaster...up and down."

Well, I'm going to expand on that a bit...My life feels more like the Corkscrew. You know, the one that not only goes up and down, but upside down? Actually that was my favorite the last time I was at Cedar Point, which was oh, let's just say a looong time ago. The biggest Coaster then was the Gemini. No kidding.

Anyway, I digress...

Add chronic illlness and a 2 1/2 year old and you've got a no holds barred, up and down and upside down, stomach churning, mild blowing, thrilling, terrifying ride. One minute, you're just having a blast...the beast called MG has been satisfied momentarily, Jacob is healthy and wonderful and perfect...and then...BAM! Upside down...but this time the straps holding you in snap, and you're hanging on for your life. You're literally white-knuckling it for your very life.

This is my life.

Some days I am the happiest, most contented, thrilled-with-my-life, on-the-right-track-with-God, getting-along-perfectly-with-my-husband, feeling-strong, super-mom, confident woman. Then there are the other 360 days of the year! : ) But seriously...lately, WOW...what a battle. If I did not have God in my life, and friends who know Him, I would be in the loony bin. (I've also recently connected with an old friend on facebook who is the BOSS at the loony bin, who holds the keys to the padded cells, so...I'm just sayin').

One dear friend has been calling me DAILY to pray over me. Every day. Do you have any idea how precious that woman is to me? Another friend who I know lifts me up in prayer daily also listen to me rant and rave and emotionally vomit, and she take it with the greatest of ease...but she's not afraid to ask the tough questions either. God Bless you both....I couldn't get along without you.

Sometimes I almost feel schizophrenic...but I have good company. David, the Psalmist, was one emotional guy! He makes me feel better about all of my outbursts, good AND bad. Psalm 42:9-11 "I say to God my Rock, "Why have you forgotten me? Why must I go about mourning, oppressed by the enemy?" My bones suffer mortal agony as my foes taunt me, saying to me all day long, "Where is your God?"

Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God."

It's like he not only goes back and forth but he also talks to himself, and then answers! I LOVE this guy! I'm not sure what the whole point of this post is...just that life is crazy, I guess, and I'm really glad I have godly friends who help me stay on track, spiritually, emotionally...(I don't think mentally, but that's a whooooole other subject!)

Saturday, April 18, 2009

After 32 Months....

After 32 months, almost to the day, my precious baby got his very first ear infection. And a double one at that. You should have seen the doctor when she asked if he was allergic to any medication, and I said, well, he's never been on any, so I wouldn't know... She was like, he's never had an ear infection??? I'm like, um, no? Jacob has only been really sick 3 times in his life. Once when he was about 12 months, last June when he got giraffe-lickem-itis from feeding the giraffes at Binder Park (it was really roseola but it's funnier the other way) and now. But he has never required an antibiotic. He's actually doing pretty good, but yesterday, oh it just broke my heart to look at him. His eyes were all droopy and watery, his nose was just a constant stream, he was coughing almost continually...Horrible!!!

He looks pretty darn good here, but his little nose is all red from drippin' and his cheeks are red from wiping his drippin' nose with his sleeve...I know, I know...he HATES it when I wipe it. And then there's the "Booger Sucker;" the bane of every baby and toddler's existence. When he was really little, he would just lay there and be like, whatever...now he screams and thrashes his head side to side...I'm not strong enough to hold him down, so I have to go for the jab-and-suck, which as you can imagine isn't always successful. He starts screaming, "No boodah! No Boodah!" (His "g"'s aren't great get...so when you ask him what Daddy's "other" name is, it's Doud." Pretty darn cute.

The not so cute part is that my chest hurts again, and I had to miss my trip to Ann Arbor yesterday, so I'm hoping that doesn't mess everything up. We're tacking on an extra one after next Friday, so...we'll see! I certainly don't think I'll get an ear infection, but everything goes to my chest, which is the weakest part of me (and the most dangerous to be sick there!) But whatever. I made it through this last time....I can make it through again, I suppose.

I did get to Linda's folks...please keep praying for them...she's been gone just over 6 months, and the pain is still very fresh and raw. I was bummed that they didn't have any of her clothes, but I got a whole try of her earrings, a candle snuffer we had gotten her...the jewelry box Doug had made for her...and a couple of other tangible things...Like the giant green Rainforest Cafe mug that is now my morning coffee mug. Oh, how I miss her...but as painful as it seems, it helps me to have these things of hers...not sure why...Her mom couldn't even look at them.

So....please, once again, still, continue, however ya wanna say it....keep us in your prayers.... We need them, and we appreciate them more than you know!!


Thursday, April 16, 2009

Frustration Rising

Oh the joyous ups and downs of life.

I guess my quota for having a life has been met by attending 2 Bible studies, one ladies retreat, and one Saturday service.

The frustration is getting to me. Just when we start to enjoy life....BAM! Now I know that as Chrisitans we are TOLD that life won't be easy...but I was thinking more along the lines of being persecuted for your faith, not suffering 90% of the time from some crappy illness.

Jacob is sick. Again. Still. Whatever. He has a fever, runny nose and a nasty cough. He hardly ever coughs. This is my life: Decide to try to have one (a life), or stay home and seclude yourself from the world praying no errant germs find their way in. Either way pretty much stinks because if we stay home all the time, I lose my mind. If we go out, I could get as sick as I just was, and maybe next time end up in the hospital. Although this time it was someone that came to the house that gave us the germs from toys they brought in (not on purpose of course) so I guess not only can we not leave the house we can't have anyone over.

Yes, I know life isn't fair. And yup, I could probably use a little tweaking of the attitude today. I'm completely emotional from PMS and tonight I'm going to Linda's parents to look at her stuff they're selling at a garage sale tomorrow. Then we were supposed to go to Costco, but who knows now. I'm still going to the garage sale. I need some of her things...it will bring me comfort. It's more than having pictures....I want something to always remember her by...

So anyway...whoever you are, wherever you are, if you could say a prayer today that A. I don't lose my mind, B. That Jacob gets over this quickly, and C. That I don't get sick again. We also have to cancel my trip to Ann Arbor tomorrow, which I really don't want to do, but can't take a sick kid, and I don't want to leave him anyway when he's sick. Hopefully postponing a week won't mess up all the progress I've made.

So, no shiny post from me today. Just a life-can-be-really-crappy-sometimes-post.
At least the sun is out!!!!!

Monday, April 13, 2009

Incredible Time of Worship

Wow. Went to the first InTents Life family worship and Bible study Saturday night. AMAZING. It was so powerful...so moving....so inspiring...so awesome! And I was able to be a part of it! I am so thankful for that. I have been sick literally every day since the InTents Life retreat...it's like satan was just attacking and attacking because I was finally feeling well enough to start participating in Bible study again. Well, he's got a fight on his hands because I will NOT go quietly! The retreat was March 21. Saturday service was April 11, (21 days, two of which I was "this" close to going to the hospital) ....the first day that I was not ill. What a blessing!!!! And then Sunday I got to go to my parents for Easter... spent time with my whole family...what a weekend! And today, even though my precious boy woke up at 6...well, when your 2 year old climbs in bed with you asking for butterly kisses, it really doesn't matter what time it is!

I have many challenges in my life. But I have even more blessings....First of all, I KNOW my Redeemer lives! A wonderful, supportive husband who indulges my wishes for ducks and chickens and turkeys, knowing he will have to do all the work...(Oh, and because of the service Saturday we are getting a baby sheep...Thanks, Pastor Dave!).....my incredible, godly friends who love and support me, visit me, help me out, volunteer to help me out, send me encouraging cards and e-mails (praise God for e-mail friends!) bring meals to my family when I am really sick...pray for me daily...even on the phone! A happy healthy child who loves his Mommy and will grow up to love Jesus, and asks for butterfly kisses....my heart is overflowing. Parents who are still here on earth, healthy nieces and nephews...a fabulous, warm, cozy farmhouse in the middle of nowhere, lots of land for Jacob to run around on...the list could go on and on.

Even though there are times when I hit bottom, feel like giving up, when I cry out to God to just stop all this, to take it away and He chooses not to at this point...even then...deep down, I know my life is GOOD. When you really focus on what's important, and don't get me wrong, health is important, but when you really look at your life....when I look at MY life.....God is GOOD. He has blessed me beyond measure. Thank you Jesus.

CLARIFICATION: I totally should have re-read the post...it was quite misleading! We're not getting BUNNY the sheep, but we will BE GETTING a sheep....someday. I told Doug we could just have her in the house in diapers for now...and he FREAKED OUT. (Do remember I grew up in the city.....I live on a farm, but I'm not a farm-girl just yet!) So I'm sure Bunny has a wonderful home, but it's not with us. We will surely keep you posted when we add on... : )

Saturday, April 11, 2009

Another Lovely Trip to Needle-land

Okay, so someone who doesn't know me would probably look at me today and think, now THERE'S a brand new I-don't-know-how-to-shoot-up-yet junkie. Why, you ask?

Well, pheresis went not-so-hot yesterday. (I remained completely calm, remarkably.) I know lots of people were praying for me, and that was a VERY good thing, because there's no other reason I did NOT flip out. I've had this procedure 100's of times, but I still hate needles and I still hate having it done.

Okay, the nurse (one I like very much and is very good) got the draw needle in. (This is the short needle about the width of a fork tine that draws the blood out and into the pheresis machine). Not so much fun, but it only hurts for a few minutes. Then, they do the return line (where the new plasma mixed with my blood goes back in), which is a bit smaller needle, but much longer (owie). She puts it in the normal vein they use, and after about 2 minutes I was like stamping my feet and "pptting" my mouth (those of you who know me have heard me do that), and thank God they stopped it right away. So that vein was blown.

Nice. So she said, what vein so they use secondarily? I'm like, the one in the crook of my elbow, but it's crooked, so it's tough to get in. Plus she's a lefty, so it's even harder. She didn't think that one would work. So she tried one on the outside of my arm, about an inch above my wrist bone. Got it in (again, HOLY OWIE BATMAN!) and this one IMMEDIATELY hurt. And I mean HURT! So I'm like, exactly what happens that I feel such pain? And she said, well, the needle must have gone through the vein, and the saline is going directly into your subcuateous tissue. In English, it's basically going into a space where there is no space and fluid builds up and causes intense pressure. So I have a huge bruise there. And another needle mark.

Finally, she said, I'm confident I can get it in the back of your hand, but we'll have to use a smaller needle, and you'll run slower. (I was feeling kind of bad for her, because she looked like she was on the verge of panic, and like I was either going to crash or hit her...I was really okay).
So she finally gets the one in my hand, and both arms hurt for pretty much the whole time, which took about 30 minutes longer than normal. (Which after they've pumped you full of saline trying to get the needles right seems like an eternity!!) Oh well. All of my treatments usually go so well that once in a while we have to have a bummer treatment to even it out, I suppose.

Oh, and I talked to Dr. Cooling, and she said though I am still slightly anemic, my blood counts were better than they were in October, and even though the red blood cells are small, they are getting bigger. So I was like, cool...no extra treamtment (like blood transfusion) needed.

On the way home I had a horrible pain attack (in my abdomen) about an hour from home, but it was gone by the time we got home. I am confident that was the last one, and that I will have NO side effects from the Fosamax tomorrow so I will be able to go to services tonight (I'm so excited!!) and to Easter with my family tomorrow.

Everyone have a blessed Easter....and please remember that Jesus died and rose again, for YOU.

"Surely He took up our infimities and carried our sorrows, yet we condsidered Him stricken by God, smitten by Him and afflicted. But He was pierced for OUR transgressions, He was crushed for our iniquities; the punishment that brought us peace was upon HIM, and by His wounds we are healed. We ALL, like sheep, have gone astray, each of us has turned to his own way; and the Lord has laid on Him the iniquity of us all. He was oppressed and afflicted, yet He did not open his mouth, He was led like a lamb to slaughter and as a sheep before her shearers is silent, so He did not open His mouth." Isaiah 53

"The women....found the stone rolled away from the tomb, but when they entered, they did not find the body of the Lord Jesus. While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. In their fright the women bowed with their faces to the ground, but the men said to them, 'Why do you look for the Living among the dead? He is not here; HE HAS RISEN!'" Luke 24

Hallelujah! He is RISEN indeed!

Thursday, April 9, 2009

So Many Battles...but only one WAR

Oh friends. The battles that wage within the soul. For me, right now, the most obvious is my health. It is SO hard to stay emotionally stable and mentally sound when you are sick day after day after day. A wonderful friend called me and told me she felt like the Lord had directed her to call me, and every day, whether I felt like it or not, I needed to say, outloud, "I am healed." Part of me (sorry Shawn, it's just my upbringing) was like, Okay, I'll do it because it's YOU that asked. : ) So every morning, Jacob and I say, "We are healed in the name of Jesus." The way Jacob says it cracks me up.....In the naaaaaame of Jesus. I'm raising a true Pentacostal here people.

But seriously...the ONLY way to win any battle is to fight. You can't rest for a moment. You have to be battle ready all the time, and the most important thing to remember, folks, is that we are NOT fighting against flesh and blood. We have an enemy, and he comes to KILL, STEAL, and DESTROY. And we have a Savior that came so that we might have LIFE and have it more ABUNDANTLY. Do I know why we have to fight so hard? No, but I know that we will not ever fight as long or as hard as Christ did at Calvary.

Do I know why we suffer? Nope. But again, We will never suffer as much as the Lamb that was Slain.

There are many other battles in this life: alcoholism, gambling, food and other addictions. The list is really endless. But always remember we are NOT fighting flesh and blood, so we can't fight with natural weapons. We must fight with the weapons of God, which is His Word.
Can I quote the Bible chapter and verse? Not as much as I should be able to. But I know that it is the only Hope we have left. And we all need to get into it and breathe it into our very pores.

This week has been horrible for me. Up and down, SO SO SO exhausted. When your mind and body are wiped out it is SO easy for the enemy to come in and start taunting you. "You're worthless." "No one on this earth needs you." "You are such a burden to others" "Why did you ever have that child if you can't take care of him?" These have been my tormented thoughts this week.

Friends, when you find yourself if this position, FIGHT. If you are simply too weary, call people and ask them to pray with you, for you...to intercede when you just don't have the strength.

We fight many battles, friends, but there is only ONE war, and we win. At the end of all of this, we get it ALL...we just have to endure til then. When I post things on this blog, I am speaking to myself as much if not more than anyone who may be reading it. Do NOT give in to the schemes of the devil.

God is with you always. He will NEVER leave you or forsake you. Try to remember that. Close your eyes, and imagine this HUGE wing coming over you to cover you from everything....you are warm and safe and secure, and nothing cam harm you. That is truly the way we are if we are in Christ. Protected. Safe.

But that doesn't mean that we will not have trials. On the contrary, the more we fight the more battles we have. But the end will be so worth it my friends. It will be so worth it.

Wednesday, April 8, 2009

I was Wrong...It was a Train

Okay. So Monday was almost normal. I felt kinda off and on, but felt good enough to go to some wonderful friends's house (Kim and Jason) and have an awesome time fellowshipping and watching the kids play. What a riot. We had such a great time!

Then yesterday, I felt okay in the AM...about noon I was feeling some oh-too-familiar pangs in the gut. By naptime, it was pain. About an hour after Doug got home, it was just like Saturday. Doubling over, make ya bawl while curling up in bed pain. So I was in bed from 6 yesterday til 8 this morning. Thank God my in-laws came to take care of Jacob, because I'm very shortly going back to bed.

Last night I was seriously debating on whether or not I should go to the hospital, again. I was thinking burst appendix, gallstones...I don't know. I decided to suck it up, and finally fell asleep about 11:30. This morning I feel better than last night, but I have zero energy.

Getting ready to do a breathing treatment, clean my trach, and go back to bed. Oh how I love my life right now....Going to Ann Arbor once a week, feeling like crap every day, not even being able to get out of bed....oh, don'tcha just wanna be like me???

Monday, April 6, 2009

I Think I See the End of the Tunnel!

And this time, I don't think it's a train!

Oh my stars. Saturday was one of the worst days of my life. In bed all day, writhing in pain and agony. Either food poisoning (but no one else who ate the same as me got sick) or some horrifying 24 hour intestinal bug. Talk about pain. Oh my WORD am I glad that's over. I've been in bed sick more in the last 2 weeks than I have since I've been out of the hospital in 2000.

I'm FINALLY feeling more normal today...(yes, I know, har har, I've never really been normal!)
Woke up with a migraine, but that's easing up, and I'm still a bit weak, but so so so much better. Thank the Lord!!!

I've been really getting into politics lately. Which kind of cracks me up because I hate politicians. It's just such a shame when you really look at the Constitution and the Declaration of Independence and compare it to where we are as a country. It's shocking. The power the government has is crazy! It's not supposed to be that way!! Since when does the President of a supposedly free, capitalist, free-market society insist the CEO of GM get fired in order to continue supporting the corporation? Since when did the government start supporting private corporations at all??? I'm afraid we're skipping the road to socialism and heading down the crooked, forked path of communism. Shocking, but not that far off, if you're really paying attention.

I know there are a lot of things out there that demand our time and energy, but I am prevailing upon everyone who reads this and values their freedom to stand up and be heard. There are Tea Parties (taxed enough already) going on all over the country, where you can peacefully make your voice heard. We are a governemnt BY the people FOR the people. They work for US, we don't work for them. That's the way it's SUPPOSED to be.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the pursuit of Happiness. That to secure these rights Governments are instituted among Men, deriving their powers from the consent of the governed---that whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute a new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likey to effect their Safety and Happiness.....But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their DUTY, to throw off such Government, and to provide new Guards for their future security."
-Declaration of Independence, July 4th, 1776

How have we gotten so far off track? And more importantly, what are we going to do about it?

Saturday, April 4, 2009

One Foot in front of the Other

Two treatments down, three to go. Every Friday this month we will be heading back to Ann Arbor for another pheresis treatment.

Briefly, for those of you who don't know, what the heck is plasmapheresis?? I get two needles stuck in me, one in each arm. One needle (about the size of a fork tine) draws my blood out and into a machine. It spins (centrifuge) the plasma out of my blood, then new plasma is put in. The blood is then put back into the other arm (the return needle) with the new plasma in. Most of the time I don't have them turn the blood warmer on, because if I get too warm I itch now. Never used to. And I mean the painful kind of I-have-hives-all-over-and-if-I-don't-scratch-I'm-going-to-lose-what's-left-of-my-mind, itch.

So, I had that done Tuesday and Friday this week. Yesterday I also saw 2 different doctors. I saw my neurologist, who wants me to have 3 more treatments instead of two, and then see how I am. There is another option (in addition to everything else) called Rituxin, that is actually used for lymphoma and leukemia treatment. It's a kind of chemo, but my hair won't fall out. He said the side effects are rare (which means I would get them), and none of the patients he's used them on have had any. BUT, the side effects are bad. He said "You get strange illnesses." I was like, oh, please, may I have another??? I'm like, um, dare I ask? He said basically it can "awaken" things in your body that are dead or dormant. For example, every human being on the earth has the herpes virus (usually comes out in cold sores, or is dormant, and some have the other kind), and the Rituxin could bring that virus out in any manifestation. Or, since I have been exposed to Tuberculosis, I could get that. Or shingles, since I've had chicken pox. Or mumps, measles.... I was like, I think I'll pass!

He was basically telling me there ARE other options if this doesn't work. Out of all of the patients he has (and he is the head of the neruo-muscular clinic at the U of M), he only has 5 MuSK+ MG patients, one being me. One of his patients requires very little treatment (I was ready to spit nails at that) one they can't even get out of the hospital, and 3 are pretty much like me...can get very seriously ill and take a lot to control. OH, I am just so lucky!

The second doctor I saw was concerned about some blood results from last October, so wanted me to repeat them....found out that I am still anemic, and that my red blood cells are too small. Well glory be, how the heck do you fix that??? She was gone by the time the results came back, so I willbe talking to her next Friday when we go back. Oh, I just love being me!

So I'm trying to keep a stiff upper lip, but last night was just too much. Basically most of this month is going to stink, we're going to be on the road all the time, eating up gas money and adding mucho mileage to the car...I guess I'll just have to look at the positive side....lots of time alone with hubby, even though I sleep through most of it.

Keep me in your prayers folks. It has been a hard journey. I'm trying desperately to just put one foot in front of the other, as I'm not sure what else I can do. I've tried one day at a time, but I'm really, truly more at one hour at a time right now. I just need to keep that one foot in front of the other...keep going. It's tough. It's just plain crappy. I miss being a good Mommy to my baby boy. I know he misses the stronger me (strong being a very relative term here), because he's a little cranky, and just wants to cling when I'm here. I'm not really strong enough right now to even hold him much.

So we're had some tears around here lately, and expect to have some more. Just on a really rock road right now. I appreciate all of your love and support, and especially your prayers.

Thursday, April 2, 2009

Walking the walk

Many thanks to dear friends who have offered their support and encouragement during this tough time for me physically right now. I'm as bad as I have been in years, and it's really difficult with a 2 year old. My family stepped up to the plate, (thanks Deb, Rachel, and mom! and Lori for offering!! Love you all) and many friends offered to help (all at the same time, which was funny to me!) But to each and every one of you, a heart felt thanks. It's so easy to just not respond, or to send a card instead, but for those of you that said," What do you need?" I say, thank you my friends. Thank you from the bottom of my heart.

I realize that a lot of this was last minute (thus the word emergency!) and many of you had packed schedules. Thank you for responding and just letting me know you'd pray. You are the hands and feet of Jesus, and you make me heart sing.

BIG thanks to Joanna and the boys who will be at my house at 8:30 AM (Yes, morning).... I know you guys are night owls, and I know this IS a sacrifice...please know I really appreciate you, and love your whole family like my own.

Please just pray I get through this day (Doug has an appt. after work and a meeting tonight), and that the treamtment goes well again tomorrow.

"And this is my prayer: that your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ—to the glory and praise of God." Philippians 1:9-11

Wednesday, April 1, 2009

Did Anyone Catch the Number of that Train?

The one that ran over me, I mean.

My emergency treatment went pretty well yesterday. Today I think I know what roadkill (that isn't quite dead) feels like. Sooooooooooooooooo exhausted.

My mom was here all day...YAY! It was SO awesome to have her home! (Daddy too, but he's coming on Friday).

Tomorrow is a long day on my own, then Friday back to Ann Arbor.