Friday, June 26, 2009

Sounds from the Farm (and some thanks)

To even believe that I really live on a farm is taking a step of faith for those of you who knew me “before MG.” Some things are so priceless, though, I had to share them. The city slickers will have to just use their imaginations… : )

Last night Doug went out to feed the chickens and change their water, collect eggs, etc. I peek out the window, and see Doug, carrying his wares, Moose tagging along, and 18 chickens madly running to keep up with my husband’s long stride. If you’ve never seen a chicken run, it’s hilarious. I mean belly-laugh-oh-my-gosh-I’m-going-to-pee-my-pants hilarious. As least for us former city slickers!

This morning, at the crack of dawn, I wake up. The dogs have to go outside and go potty, so off we go. I remember people always saying they move out to the country for the peace and quiet. Peace, yes. Definitely. Quiet?? Not so much. The first thing I hear is a cock-a-doodle-quaaack quack quack quack quack. I just had to chuckle. Then, I’m taken aback by the frogs and crickets…SO loud! The birds are swooping and chirping and singing, I hear sheep baa-ing (okay, now THAT’S a word). Ya know, what really surprised me about sheep is how LOUD they are! They almost sound like cows!

Then I hear this crazy, warbling that I believed to be a bird of some sort. Maybe a “I’m not a morning person” bird, or maybe just a bird with something rather large stuck in its throat. Anyway. All of this was in about 3 minutes while I stood outside waiting for the dogs. (Didn’t want to go up the steps twice with how I’m feeling!) But again, a little blessing in the mess…I wouldn’t have stood out there to notice all the cool and crazy things that go on at daybreak on a farm. And I’m so glad I didn’t miss it! (Everyone who TRULY lives on or works a farm is laughing at me...you slept past daybreak???? We're DONE with chores by then!)

So I’m off to Ann Arbor today. Doug and I are now thinking that Dr. Teener may change my medication. I’m on CellCept, which has been a miracle…so I’m a little wary, so please pray for wisdom. I think he would put me on Imuran, which is to MG what Prozac is to depression. An oldie but a goodie, I guess.

Thank you Shawn, for taking Jacob yesterday, and making sure we were okay before you left to continue on with your busy day. Thank you Leigh and Barb, for coming to pray with me. I felt a calm come over me when you’re were praying that I know can ONLY come from the Lord. It completely changed my mood and attitude. Thank you for caring enough to come over and pray. It meant a lot. Thank you to all my other dear, dear friends, who even though you have your own struggles, you continue to pray me through mine. I love you all.

Thursday, June 25, 2009

Ug.

Hey all,

Not doing well. Waiting to hear from neurologist. Need to figure out what's going on and fix it! Arms and legs super weak...head heavy...go to Ann Arbor tomorrow and Monday for pheresis. Doesn't seem to be working right now, which kinda freaks me out, because that's always been my fix.

Please pray for wisdom for my doc (Dr. Teener) and that I am no anxious about being in the hospital if that's what I have to do.
Thanks.

Wednesday, June 24, 2009

Broken

So I'm doing this Bible study with Joanna called No Other gods. Whoa. This is not a lightweight, no sir. It is a heavy-hitter! That is, if you WANT it to be. I have found, as I'm sure many of you have, that something is only as "deep" as you want it to be...but I am going deep, because there are issues in my life that need gutting.

That said, listen to this quote from page 64 of No Other gods regarding
God's "brandy of beauty:"
"A healed relationship or person can reflect more glory than one who never knew brokenness."

Okay, I thought. Broken doesn't necessarily mean pulverized...then I looked it up in the dictionary. (Yes, I'm a "word nerd," I love doing this.) Broken: 1. NO LONGER WHOLE in two or more pieces e.g. after having been dropped or hit with something hard.

Um, yah. Have you ever dropped a glass bowl? It shatters in a million pieces! (Especially on a tile floor, not like I would know anything about that personally...) Ahem.

My favorite book (next to the Bible) is my Synonym Finder. Why they don't just call it a thesaurus I don't know. Anywho...I checked out broken, and here are some synonyms:

Shattered. Smashed. Crushed. Mangled. Pulverized. Ruptured. Torn. Damaged. Destroyed.
I will tell you a few things my friends, first of all, I'm pretty darn sure that all of us have felt one of these words in our lives...maybe recently. Maybe as recently as last week...maybe, right now.

Second, always remember that with God: "We are hard pressed on every side, but NOT crushed; perplexed, but NOT in despair, persecuted, but NOT abandoned, struck down but NOT DESTROYED." II Corinthains 4:9

Once again, the WORLD'S definition of something and GOD'S definition are completely different. The world says if you are broken, you are destroyed. GOD says, if you are broken, HIS glory will be revealed. HIS STRENGTH will be made perfect in YOUR WEAKNESS. He is making you a new creation...He loves you too much to let you grow complacent.

I am preaching to the choir here, folks. I will be the first to admit that I stumble under adversity. This last year has just been a doozy. But God knows that sometimes when I am on the mountain top, I get lost looking at the view, and not reflecting upon that which put me on the top. So He keeps giving me the "valley view" until I get it. I'm not sure that I will ever COMPLETELY get it...I mean, come on, what fun would that be? : }

Lest I digress, let's get back to the quote. Did you ever wonder what our purpose was on this earth? Very simple. To glorify God. Some people I know can do that in an amazing way without have to go down the wrong road, or without suffereing. Most do not. "A healed person or relationship"....that doesn't necessarily mean physical healing, but it certainly could. How magnificent when a believer goes to the doctor, only to find that the cancer that was there IS NO MORE? That is GLORY, my friends. Much more than if that person never got cancer in the first place?

However, God can reveal His glory in the same way when we walk through the valley of the shadow of death, and do it with HIS Strength! If you knew of someone that God healed of cancer, it would be a huge WOW factor. And God would get HUGE glory. But for how long? Would we forget like the Israelites seemed to forget so quickly that God parted the Red Sea for them? But what about the person who quietly walks through their disease with God, day after day, moment after moment, constantly reflecting Him? (And I'm soooo not saying that's me, because there's not much quiet about me! I go along, but many times kicking and screaming!!) : )

Now on to a reallllly sticky subject, but one very close to my heart. Does God SEND disease? I believe He does. This is one thing I know more than anything else in my being: GOD WILL DO WHATEVER IT TAKES TO BRING YOU CLOSER TO HIM.
And I mean whatever. Some things He allows to befall us, but I truly and completely believe that other things He Himself sends to us, so that we can grow closer to Him, and so that His glory will be revealed. Some of us (and I mean ME) are so stubborn we don't get the more subtle hints and need the "big guns." And when this happens, my friends, you will never be the same again.

Thursday, June 18, 2009

Hi-Ho, Hi-Ho, It's Off To Ann Arbor I Go.....

Well, poop.

Things just aren't getting better! So. I will be going to Ann Arbor tomorrow, as scheduled, and then next week Tuesday and Friday, and the following Monday (19th, 23rd, 26th, and 29th). If I were an inpatient, they would do a treatment every other day for 10 days. This will be four in 11 days, and for living 150 mils away, not so bad. It's going to be a long couple of weeks, lots of driving, but thank GOD for 2 sets of grandparents who are not only willing, but also LOVE to take care of Jacob. Still, it's financially a booger, with gas being what it is...it will probably be between $160-$200 for 4 trips. Add to that the info from the dentist yesterday, that I need TWO crowns (after not having a cavity for 10+ years!) of which OUR portion (after maxing out our insurance for the year) is $565.00!!! Yeah, I can just poo out $1000.00. No biggie. WHATEVER.

But I'm not stressed. Nope. Not at all.....(does anyone else hear those voices?!?!?!?) ; ) Sometimes I almost think being committed would be easier...ALMOST...

I know most of why the MG is flaring...due to stress. It is so hard to be a good mom when you're healthy. Dealing with what I do, then raising an almost-3-year-oldI-can-do-it-myself-but-it-will-be-a-stressful-nightmare-for-Mommy-to-clean, pick-up, live through, whatever. Plus I would LIKE to have a life...like going to Bible study, and oh yah...what's that other thing called?? Church! That's it!

I know, I know...I'm being a wee bit sarcastic....Joanna must be rubbing off on me! {wink wink}

I'm having symptoms I haven't had in a long time....daily double vision...trouble breathing and swallowing my pills. I haven't had that since it went away finally after I had Jacob. Makes me a LITTLE nervous. My only options for additional treatment is more pheresis...my veins have to hold out, or I will have to get a fistula (which I DO NOT want)....they are painful and prone it infection. They like to do that only if the veins don't hold up. I'm on the maximum dose of Cellcept before the damage to my liver and kidneys starts to outweigh the benefits of the medication. Because the MG is flaring so badly and I'm so stressed, my fibromyalgia is worse, and every little spot Jacob touches (let along digs those tiny little elbows in) is excruciating. Seriously. Unless you experience it, it's hard to explain.

And yet the tune going through my head right now is, "I will sing of the mercies of the Lord forever, I will sing....I will sing....With my mouth will I make known, His faithfulness, His faithfulness, with my mouth, will I make known, His faithfulness to all generations." Hmmmm, now THAT'S a God thing, cuz that's NOT what my natural mind would be thinking!! Maybe I'm screaming for mercy and that's how the Holy Spirit is allowing it to come out! ; )

SO...please keep me in your prayers over these next few weeks, as well as Jacob, Doug and our parents....it's a lot of coming and going, shuffling Jacob, crazy meals, eating out, etc. Let's just say Subway will be seeing us a lot the next 2 weeks!

I'm trying very hard to stay positive and be encouraged, but man, is it tough!!

Saturday, June 13, 2009

Remembering

Last night we went to my mom and dad's to visit one last time with my brother Mike, who is here from California. My sister Deb and my Aunt Dee {my favorite aunt} were also there. We had the best time! We all had dinner together, and after dinner went into the living room and just talked. We got onto the topic of when I was in the hospital in 2000 when I was very, very ill. We kind of went back to the first symptom 14 years ago, and remembered the long journey to this point. Some of it was really painful, some thought-provoking...I got all verklempt to say the least! We laughed, {you would have too if you heard some of the things I said under the influence of very powerful amnesiacs! I might not believe it myself if I didn't have some of it in my very sad, very weak handwriting!} I cried...I'm not sure if my brother had ever heard the whole story...and as I was recalling it, I remembered how many miracles God did in my life during that time.

In September of 2000 I was so ill. I could not walk more than 10 feet without resting. My skin was yellow. My face was void of any emotion. I couldn't breathe, I could sleep, I had panic attacks all the time. I had a sleep study, and an ABG done (arterial blood gas). The carbon dioxide level in my blood was higher than Jacob's had been when he was on the ventilator in the neonatal ICU! And I had just quit working 2 weeks prior to this.

The doctor put me on oxygen, and I literally got stoned. I got high on OXYGEN! My brain was so deprived of oxygen, and the carbon dioxide levels in myblood were so high, I shouldn't have survived. My aunt is a nurse, and she came right out and said last night, there is "no way, other than a miracle, that you were ALIVE at that point, let alone functional."

And that was the first of many. While I do have SOME memory issues and I don't feel quite as sharp as I used to be, I don't have any brain damage from all that lack of oxygen. Then in the hospital I got staph pneumonia...the list goes on and on.

While it was difficult to relive some of this, I've been thinking all day about the following Scripture passage:

"Now the Jordan is at flood stage all...during harvest. Yet as soon as the priests who carried the ark reached the Jordan and their feet touched the water's edge,the water from upstream stopped flowing....while the water flowing down...was completely cut off.

So the people crossed over opposite Jericho. The priests who carried the ark of the covenant of the Lord stood firm on dry ground in the middle of the Jordan, while all Israel passed by until the whole nation had completed the crossing on dry ground. When the whole nation had finished crossing the Jordan, the Lord said to Joshua, "Choose twelve men from among the people, one from each tribe, and tell them to take up twelve stones from the middle of the Jordan from right where the priests stood and to carry them over with you and put them down at the place where you stay tonight"....

Joshua...said to them...'each of you is to take up a stone on his shoulder, according to the number of the tribes of the Israelites, to serve as a sign among you. In the future, when your children ask you, 'What do these stones mean?' tell them that the flow of the Jordan was cut off before the ark of the covenant of the Lord. When it crossed over the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever.'"
Joshua 3:15-4:7

I NEED to remember those times. That is a HUGE part of my testimony! God didn't tell Joshua to have them take stones from one side of the Jordan or the other, He told them to take the stones from the middle of the Jordan. From the exact place where God had perfonrmed the miracle that saved their lives, again (they had already crossed the Red Sea on dry ground). In a way, my trach is my pile of rocks. People see me today and don't really understand how I ever cold have been that sick. Other than my husband, family, and a few friends (and my old friends on facebook!) very few people in my life NOW know what I have been through. We have to talk about the things God has done in our lives, or how will anyone know what He has done? I mean, people can read the Bible and learn about God, all the things He's done and the miracles Jesus performed, but NOTHING speaks to the power of God more than a personal story. Some folks don't think that God still does miracles today...some think the Bible is a nice story, even a good history book, but don't REALLY understand that God is alive TODAY!

We MUST remember. And this is ONE time we need to OPEN our mouths, and talk.

Friday, June 12, 2009

SO MUCH on my mind....

Sometimes it's hard to straighten it all out. I'm not even sure how to put everything I'm thinking into words....fears, insecurities, appreciation, disappointment, gratitude, thankfulness, realization....the only thing I AM sure of is that God is on the throne, and He ain't going anywhere! Sure am glad I'M not in charge.

I finally started writing my book. I've had the opening line in my head for about 8 months now, and I've been talking about writing one for years...well, I finally started. I really don't know what I'm doing as far as structure...I've never been good at formatting stuff, I just write. I'll have to have someone help me on the specifics of all that. I guess that's what editors are for??

I'm completely bummed that I missed the beginning of summer Bible study last night. I had a terrible, horrible, no-good, very bad day. (Well, I would have if my name was Alexander...) I guess it wasn't THAT bad. But it wasn't great. I woke up groggy...Wednesday morning, Jacob decided to wake up at 5:30. Nice. Wednesday afternoon my mom, dad and brother came over and had dinner. It was awesome, but I was SO tired. So yesterday I was super tired, and a helper came over for Jacob, and Jacob was just NOT in the mood. He was ridiculous.

I started getting a horrible headache... I tried to rest in the afternoon while Jacob napped...I couldn't sleep, of course... But I rested...got up feeling even worse. I do feel a little better today, but I'm still really tired. We're going to my mom and dad's tonight for supper to see my brother one last time before he goes back to California. What a visit...I'm SO glad he came. It has meant a lot to all of us...

Anyway...hopefully I can rest and start feeling better....no pheresis until next Friday. Maybe that will help....

Tuesday, June 9, 2009

Book Review

WHooo-Hoooo!!! Holy-Amazing-Book, Batman!!!

If you are a woman, and if you are married or engaged to be married...this book is a MUST READ in my opinion. It is called "For Women Only...What you need to know about the inner lives of men" by Shaunti Feldhahn. Holy smokes. It's been out for a while, so many of you may be like, you're a day late and a dollar short, kid. But for those of you, like me, who hadn't heard of it or read it....WHOA!

I can HONESTLY tell you that within 2 days of starting this book, my marriage had improved. All because of the change in MY thought process toward my husband. It's that amazing. The author did two professional surveys on a bunch of men from all backgrounds...married, single, church-goers, non-church-goers...and the results were remarkably similar. For example...I used to think that "romance" to men meant one thing: sex. The question asked on the survery asked men IF they took sex out of the equation, what would be more romantic: a candlelight dinner, sunset on the beach, etc., or getting out and "playing together," i.e., hiking, fishing, etc. The third option was that neither was romantic. Only 2% said neither was romantic. Fully 39%, a huge minority, said they thought romance was getting out and doing an activity together. The majority of men, 59%, thought a dinner by candlelight was romantic. Most men, however, also made the comment that a romantic evening doesn't feel complete without sex...you have to read the book to get all the nuances of that statement; otherwise I'd be typing for days!

So why on earth do they not do these things for us??? In another survey question, nearly half of the men who answered were unsure that we would like their romantic efforts. So, ladies, if your man attempts anything close to what you think HE THINKS is romantic....REWARD HIM! Tell him how much you appreciate it. And communicate! Tell him what you think is romantic... gracefully. Don't give him a directive, give him a hint.

Really, this is one of the best books I've ever read. The insight it gave me regarding the "inner lives of men" has almost completely changed what I think about how men think. And that includes my husband. Five stars on this one, girls. Pick it up!!!

Monday, June 8, 2009

Summertime....and the livin' AIN'T easy!

Between Jacob being the wonderfully healthy, active, energetic child he is, and the heat and humidity of Michigan summer, I'm soooooo looking forward to the next few months. And if you believe THAT.... ; P

Jacob will be home-schooled, so at least I don't have to worry about the transition between school and home, but dealing with him in the heat and humidity is another thing altogether. I have literally stuck my head in the freezer to cool off and breathe better when I get overheated. Strange maybe, but it really does help!

Even if it's cooler, but humid, my MG rears it ugly head and roars. It's like walking outside and being "unplugged." Doug's still working on the air conditioners, so the humidity in the house is the same as it is outside, which right now is about 75%. LOVELY. Nothing like being sticky all the time. My brother moved to California several years ago, and I remember him saying one of the things he loved about living there is that he could take a shower, dry off, and stay dry! Here in Michigan, especially when it's humid, you take a shower, dry off, and just get all damp and sticky again. YUCK!

Once the air is in I do much better. Doug freezes his buns off, but I just can't live without it. Not if I want to breathe anyway. ; ) As far as dealing with Jacob...he LOVES to read and do puzzles and stuff, which is wonderful, because when it's hot and or humid I can't go outside. We do lots of crafty activities and color, and we are learning the alphabet right now. I go online and get lots of ideas for simple toddler crafts. I have also hired a young man to come and play with Jacob (hopefully outside most of the time) on Monday and Friday morning, and have someone coming on Wednesday mornings as well. That has helped TREMENDOUSLY. Sometimes you just CAN'T go is alone.

I'm SO thankful that Jacob loves to do that crafty stuff, as well as be super active. God has given me such a well-rounded child. Just what He knew I could handle (most of the time anyway!!) Jacob is rough and tumble, yet very tender hearted. He loves to be running around like a crazy mad man, but he also loves to cuddle with a "storybook" or paint and color with Mommy. And for the most part, he is very well behaved. I have heard horror stories of other Mom's and kids...tantrums...oh, thank you Lord!!

I have started my "healthy eating plan" today. Exercise is such a frustration, but I do have a mini-tramp that I am going to try. Hopefully my legs won't give out. I know I'll have to work up to it...just a few minutes at first. When my brain is clear and I'm feeling okay I want to just jump around and dance! I love dancing. But after 2 minutes, I'm all wiped out, and can't do anything for the rest of the day. There's nothing like wanting to exercise, being all ramped up, motivated, whatever, and then your body betraying you by not cooperating. Losing weight when you have chronic illnesses is SO difficult. I am determined, however, with the strength of Almighty God on my side, and the help of friends who are holding me accountable, to do this thing!!! Now the whole world knows about it, so I have to go through with it!! I just have to really, really watch it, since I'm NOT able to be super active all the time. (Oh, plus, Doug is giving me $2.00 for every pound I lose!)

I would appreciate your prayers for this summertime...the heat, the humidity, keeping Jacob occupied without hurting myself....and for me to stay motivated to lose weight even if it will take longer because I may not be able to exercise as much as I'd like....

Thanks ya'll. I love ya so much!

Saturday, June 6, 2009

Family

With my brother here from California, we all went to my sister's church to celebrate my parents 50th anniversary. Jessica (our newlywed) drove over from Kansas. The only sad parts were missing my brother's wife and kids, and Jessie's husband, Daniel...whom most of us have not even met yet!



And of course there was a gap, as always...a hole really, where Michelle should have been. It wasn't a sorrowful event, by any means, yet I couldn't help but feel a bit melancholy about the lack of her presence. What would she be like today? (Almost 21 years since she passed away.) Would she be married? Have children? How much bigger would our family potrait have to be?





But, it was a magnificent celebration. Not many people make it to 50 years anymore. A lot don't make it past 5 or 10! So to my parents:

I love you so much. I am so thankful that God put me in your home, and gave me to you to be my mom and dad. I know there were times that I drove you crazy, and times that I acted like a spoiled child well beyond my childhood years. There were fights and hugs, laughter and tears, but no matter what happened, I always KNEW that if I ever needed anything you would be there.



Thank you for praying for me. I'm sure that your prayers summoned many an angel in my teenage years! (Even though I was a VERY GOOD teen!! : ) You led by example how to live a life for God...reading the Bible, taking me to church, and showing me where the rubber met the road when I didn't even know the road was there. You were strong when you needed to be, tender when I needed you to be, and loved me all the time, no matter what.

I hope more than anything that I make you proud. There is no better testament to parents than the way their children turn out, and I hope that anyone can see, through me, what wonderful parents you are. Thank you for helping me even now, as I battle MG, and try to raise up a godly son. You are both very precious to me, and I am blessed to call you Mom and Dad.

Wednesday, June 3, 2009

June is National Myasthenia Gravis Awareness Month

I have been dealing with this disease called MG for about 14 years now. I was not "officially" diagnosed until July of 2003, when a new test for a specific kind of MG (Musk+ MG or MMG) came out. I started having symptoms about 6 months after having chronically infected tonsils removed. I was hospitalized in October of 2000, where I spent the majority of the next 3 months at the U of M neurological intensive care unit (NICU). Prior to being hospitalized, I had been to dozens of doctors. Most of them told me it was stress, a few told me it was anxiety. One told me it was all in my head.

On October 13, 2000, I had an MRI under sedation. I quit breathing completely, and had to be emergently intubated and resuscitated. Four days later, after numerous tests, EMG's spinal taps, etc., I was flown via helicopter to the university of Michigan hospital in Ann Arbor. I was told later that the doctors were afraid I would not have survived the trip by ambulance. I don't remember much from then until November 1, 2000. I CLEARLY remember two doctors, Dr. Andrea Bozoki and Dr. Ming Hong, who told me all of this was in my head, and if I accepted it, I would get better. If you ever run into either of these doctors, turn and run for your life. Literally. They came up with some corny diagnosis of chronic motor axonal neuropathy, which translates to "fancy name for pain because you're a psycho." They sent me home with anxiety medication and pain pills, and I almost died.

It is truly a miracle I am here at all today. Many things happened to me that should have killed me. First, the carbon dioxide levels in my blood were at levels that should have required a ventilator, yet I was still working full time. By the time they realized this and put my on oxygen 24/7, I literally got high from the initial oxygen because my brain was so starved for it. It is unfathomable, except by the grace of God, that I did not have brain damage (no comments from the peanut gallery, please!) : )

Then, while in the hospital, the first 10 days were touch and go. They were not sure I would survive. I contracted staph pneumonia (MRSA), and had to be intubated and removed from the ventilator if I was to survive. It was a long, uphill battle.

I became diabetic from the huge doses of steroids there were giving me to save my life, and was in a wheelchair when I left the hospital. I walked with a walker after that. I also came home on a feeding tube, because I was not strong enough to swallow yet.

The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:
*Double vision
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)*Temporarily absent breathing
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up)
*Poor posture
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly)
*Difficulty producing the right words when needed
*Difficulty chewing
*Fatigue
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip

I can honestly say I have or have had all of the symptoms. It is not fun. A crisis situation (like when I was hospitalized) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscle by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)
Before I was hospitalized, my right hand had atrophied so much it was curled up into my body, and I looked like a stroke victim. I had to prop my head up with my elbow on the table because I couldn't hold my head up.

Fast forward: Glory to God, I now have a brilliant, fascinating, perfectly healthy son, Jacob, who will be 3 in August. Having him was the most difficult thing I've ever done. One-third of myasthenic women actually IMPROVE during pregnancy, one-third stay the same and one-third get worse. Yup, you guessed it, I got worse. By my 4th month, I could no longer speak clearly. Because I was so high-risk (35, the MG, diabetic) when I started going to the doctor I had to go every 2 weeks. At 30 weeks I started going every week, and at 34 weeks, twice a week. Jacob was bron with transient (temporary) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5. He went home 5 weeks to the day he was born. I bawled every day having to leave him in that hospital...my only comfort was knowing that he would be fine, because as soon as MY antibodies worked out of his system he would be completely healthy. And is he ever! He is the picture of health. Thank you God!

For treatment, I take CellCept, which is actually an anti-rejection drug taken by organ transplant recipients. It lowers my hyper-immune system, and keeps some of the MG symptoms at bay. I also take Prednisone, which has the same purpose. I go to the U of M aphersis lab, and have plasmapheresis, or PEX (plasma exchange) every 3 weeks. During plasmapheresis, they put a needle in each arm, take the blood out through one, run it through a machine (basically a fancy centrifuge) which removes the plasma from my blood, add new, "clean" plasma, warm the blood back up, and put it back into the other arm. For those of you who donate blood and plamsa, THANK YOU. You have literally saved my life. For those of you that haven't but are able, PLEASE donate. You can truly and completely save a life. Without plasmapheresis, I would not be alive.

I have absolutely no doubts that God saved my life for a purpose. And if that purpose is simply to tell others that they can get through hard times, that's what I will do. I never thought I could have a child. I never thought I could raise a child. But trust me, "ALL things are possible for him who believes."

If you are interested in supporting Myasthnia Gravis research, you can check out the Myasthenia Gravis Foundation of America website at www.myasthenia.org

I would like to say one last thing: If you or someone you know has a chronic illness, you can do one of several things: first of all, pray for them. Being chronically ill is lonely, isolating and depressing. If you can't always "see" their illness (many times, other than the trach, I look perfectly normal) please don't assume they are crazy, or nothing is wrong with them. You have no idea the hell they may be going through. Secondly, and very importantly, please don't judge. We are not just fat, lazy, unmotivated people who park in handicapped parking because we can't waddle to the front door. We are, first and foremost, people. People like you, who are just a little different. People who are dealing with excruciating circumstances, and may not have the energy to walk to the car after a trip around the store.

Thank you for taking the time to read this, and please join me in praying for a cure.

Monday, June 1, 2009

Refined Like Silver

First of all, what a weekend! It was TERRIFIC! Even the trip to Ann Arbor was good. Drove out of the rain by Battle Creek, had sunshine...the treatment went GREAT thank you LORD! The needles barely even hurt, which is a miracle unto itself! Saturday Doug went up to Grand Rapids to help my dad at what's left of his greenhouse, breaking down benches, loading the truck with wood...and he took Jacob to his parents. I had the house to myself, all day, quiet! It was SO exactly what I needed. Therefore, yesterday I had a terrific day! I felt peaceful, no stress at all, I was outside all morning, we went for ice cream (GO Dean's peanut butter ice cream!!) and then planted up all my flower pots at like 8:00. Couldn't have asked or planned for a better day.

Now...I came across these verses...they aren't stangers to me, but it struck me afresh how important this is...and really, how comforting!

" 'In the whole land,' declares the Lord, 'two-thirds will be struck down and perish; yet one-third will be left in it. This third I will bring into the fire; and I will refine them like silver and test them like gold. They will call on my name and I WILL ANSWER THEM; I will say, They are my people, and they will say The LORD is our GOD.' " Zechariah 13:8-9

You've probably heard this before, but as a silversith refines silver, he must hold it over the fire to purge the dross and impurities. He MUST, however, keep his eyes on the silver the entire time. If he turns away for a moment, it could be ruined. Too short of a time over the fire, and it will not be pure. Too long and it will be scorched, and worthless.

Beloved of God, I know that the fire hurts. I have walked through it and continue to walk through it to this very day. Sometimes the heat is hotter than others, but I KNOW I am not yet pure. I finally understand why James told us to "consider it pure joy" when we face trials, because we are over the flame, and the eyes of our Maker are upon us like never before. He is intently studying us, waiting for just the right time to take us off the flame.

I know it hurts...but do we want anything less for ourselves in the face of Almighty God? Do you want to be taken off too soon, and not get rid of that which God wants to remove because it is too painful? There are things in my life I am SO thankful are gone...for example, my addiction to nicotine. (Especially now that I have a trach...that would be a trick....trying to smoke through that!) I did quit years before I got really ill, but I was experiencing symptoms already. If I did not get this illness, there would have been many times when it would have been super easy to pick up the cigarette habit again. TOO easy. {Just a side note, I am SO NOT condemning anyone who smokes...I am simply using an example relevant in MY walk.} Then I may have reaped some of the natural consequences of smoking, and suffered much worse than what I have now...possibly even cancer.

There are many other things too, that God has worked on...my pride. Asking for help is NOT my idea of fun...but pride is a sin...and it DOES go before a fall...trust me. My selfishness. My need for recognition and power, my status in the professional arena...

So I want to encourage you to hang in there...I know it's hot. I know it hurts. I really do know. Just remember that the Eyes of The One Who Made You are on you all the time. You can call out, and He will answer. You ARE his child, and He IS your God.