My MG Pregnancy Story...Part One

So. I just recently met another young mom with MG! Her button is on my sidebar if you want to check it out. I was asking her about her pregnancies with MG, as she has started sharing her diagnosis story on her blog. In turn, she got me thinking of my own pregnancy journey. So here goes:

My husband and I were married for 6 weeks when I was hospitalized for some unknown illness. Before I went in, I was a mess. I couldn't walk more than 10 yards without stopping. I couldn't sleep, except for sitting up at the kitchen table, leaning over a stack of pillows. My right hand (I am right handed) was curled up, useless, and even my arm was curled up into my body. I had virtually no grip in my left hand. My speech was slurred to the point of people having a difficult time understanding me. My neck was so weak I had to prop up my head with my arm, because it couldn't hold up my head on its own. Needless to say, I was very, very ill.

When we got married, I was going downhill, but Doug and I both thought it was stress from my job. I was working 50-55 hours a week as an Operations Managet at a Trucking company, and I LOVED it. But I literally thought the stress was killing me. So I quit, and instead of getting better, I got worse. We were married (eloped pretty much) August 26, 2000. (We were still planning a "big" wedding for February, but got married legally in August so I cold be on his insurance, as I had just quit my job. What a God thing that turned out to be!) The month of September was spent going from doctor to doctor to doctor. I heard everything from "You've got a tumor on your spine" to "It's all in your head" to "I have no idea what it could be." In October I had an MRI under sedation, stopped breathing, and had to be emergently intubated. I was admitted to the hospital in Grand Rapids, and flown via helicopter 4 days later to the U of M. I was pretty much out of it for 2 weeks.

I was in and out of the Neuro-ICU (mostly in) for the next 3 months. My husband was by my side...he was committed to me, to God, and to our marriage vows. I knew I picked the right guy!
When we got married, I was 29, and Doug was 30. We kind of both assumed we'd have kids right away and get on with our lives. When I was discharged just before Christmas in 2000, I was told I either had Myasthenia Gravis, which was treatable, but incurable, or bulbar palsy, which was degenerative and terminal. I was 29 years old. The docs decided to treat me as if I had MG, because they really had no other option. If I got better, I would have MG, if I didn't get better, I knew I would die a slow, agonizing death.

Fast forward 4 years (I'm getting better, so obviously I have MG and not bulbar palsy, thank God!). Doug and I do not think it would be wise for me to have a child, but Doug is set on having our own biological child. In what I thought was a Divinely inspired plan, a friend of mine from high school (I'm not sure if she would care if I used her name, so I'll use her initials, LV) volunteered to carry Doug's and my biological child. We couldn't have been more amazed, thankful, or, frankly, surprised. She just completely volunteered, and this was actually something she had mentioned years before as a thing she could do. She had great pregnancies and super easy births...(her youngest was ONE HOUR from first contraction to birth!) We thought it was the perfect plan. We thought God had worked it all out.

It was kind of a nightmare dealing with the legality of surrogacy in Michigan. Whereas in some states, you can pay a surrogate for her services, in Michigan you cannot. You can pay for medical expenses, maternity clothing, things like that that are directly related to the pregnancy, but nothing else. No money, no gifts, nothing. We had to each hire separate attorneys (required by law, not by the generous friend who wanted to do this for us), and pay for each of them. LV's insurance covered a lot of her medical expense, prescriptions needed for her fertility drugs and stuff, which was awesome. Our insurance paid for part of mine too, but they would NOT cover the procedure of transplanting the newly formed baby into LV (to the tune of $3800.00, and that was 6 years ago!) They covered my fertility drugs, and the ultrasounds, and even the in vitro, but not the transfer. We had just enough money in the bank to cover it.

Fertility drugs are hideous. I was the the most evil woman on the planet. I would look at people and just want to scratch their eyes out! I am a generally friendly, kind, loving person by nature. This was SO not like me. The drugs were making me crazy. And the shots HURT. The one burned for like 30 minutes. Ug.

So after "X" amount of time (I can't remember exactly) I go in for the ultrasound to see how many eggs were big enough to remove. We had decided ahead of time that we would take out as many eggs as were big enough, and then fertilize and implant only 2, because if I had more than twins, I would be in BIG trouble. I would have been in trouble with twins! But I was still pretty healthy at this time...my medication was working well, and I was doing quite a bit on my own. I remember I had gone to this particular appointment by myself.

I impatiently waited for what seemed like eternity to go into the exam room for the ultrasound. The nurse came in, started the ultrasound, and started the search for eggs, on each side....and they found...... To be continued!!!!

Oh What A Day!

Wow. I cannot believe how good I am feeling! Hallelujah! It was but a mere 2 1/2 weeks ago that I thought I would never feel good again. Honestly. I was to the point where I was like, this is it. Discouragement, frustration, even anger abounded!

It has been so long.

I honestly feel better than I have in over 5 years. I'm so thankful. I'm so grateful.

I'm SO BLESSED.

I will struggle with MG until the Lord sees fit to heal me, whether this side of heaven or once I'm there. Either way, I feel like I'm getting a little glimpse of what it would be like to be healthy.

Trach aside, yesterday seemed like such a NORMAL day!

I curled my hair for the first time since I can remember. (It's been since before Jacob was born, I know that).

I wore a necklace for the first time in a long time.

I felt pretty for the first time in a loooooong time.

I dropped Jacob off at Doug's work while I ran to the chiropractor, BY MYSELF.

We went to the store at 5:00PM AFTER all the other events of the day thus far, and I was FINE.

I came home, did the dishes, cleaned up the table, straightened the bathroom a little bit, and put potatoes in the oven.

Some of you may be thinking, so what? I do that and more every day. (You probably haven't been reading my blog long!) : )

Can I just ask all of you one thing? PLEASE don't take life for granted. Every day, every minute....every breath is a miracle to me. I keep telling everyone how amazing it is to breathe! They look at me kinda funny, but they understand, because they've seen me struggle.

Struggle to get up the stairs.

Struggle to walk out to the car and get in.

Struggle to take care of my child.

Struggle to just breathe.

So today....hug your child, your spouse, your sister, friend, dog, cat, whatever! Just show love to someone, let them KNOW you love them, and take time to really appreciate the mundane. You never know when it may become the miraculous!

Thankful

There are some things that just warm my heart. Illness aside. Problems aside. When I look at things like this, there is no trouble, there is no fear. There is no worry or anxiety or pain. It's just joy.

A Boy and His Dog

My Jacob reading Daddy's magazines like a little man. How did I get so blessed as to have this amazing child??

After a long, fun day outside in the sunshine, playing hard, Jacob fell asleep on the couch. His new puppy was just as tired as he was! It's kid of hard to see Blackie because he blends into the couch!

My heart both leaps and breaks at pictures like this. My little baby is SO not a baby anymore! Something about a sleeping child just gives me peace. He's getting so big. Part of me wishes he could stay small forever...

Awww....what a cute puppy! And such an amazing, sunny, beautiful spring day!

God's handiwork. Nature attests to His glory, every day. How could this happen by chance?

There are times when I'm down. Just plain down. Depressed. But God never lets me stay there too long. This last bout was longer than most. When my health is bad day after day, week after week, month after month...you get the picture. But I really try to keep a good attitude. Many times I am NOT successful!

But then there are days like this. Like yesterday, when I could spend FOUR HOURS outside. With my son. And his dog. Enjoying the miracle of God's creation. I am truly blessed.

A Bunch of Randomness

Kind of been crazy around here. I'm feeling better again, thank GOD!! My back is healing, and I'm not in agonizing pain anymore. THAT'S always a good thing!

My formerly house-trained puppy has digressed. He has peed in the house 4 times in the last 16 hours, and pooped once. And it's not for lack of going out. He's being naughty!

Jacob, however, is doing very well potty-training!! YAY!!! Halellujah!!! FINALLY!!!

This morning has not been a pleasant one!!! Here's to a better rest-of-the-day! Hopefully getting outside in the beautiful sunshine will help!

My computer has been SO slow. Have to take it in the next time we head to Costso. It's driving me CRAZY!!!

Joanna and I FINALLY got together for Bible study again Saturday. That was good. And I won the DVD's on e-bay for about half of what they cost new, so we are going to kind of back track to watch teh DVD's. I've seen them before, but it's been 5 years. We're doing Beth Moore, Believing God. It's an AMAZING study.

Can't believe (though it's happened enough I don't know why) how under attack I have been all weekend by the stupid devil. The closer I press to God the harder he tries to get me mad and upset and depressed. Well, it ain't happenin' creep. I've read the end of the Book. You lose!!!!

Can't WAIT til Wednesday...,my parents will FINALLY be home from Florida after 5 months! Yes, I missed my Mommy!

Ran errands all day yesterday with Doug and Jacob. It was nice to all be together, and not feel like crap! Jacob was a very good boy, and we had a nice day, despite running around in the rain all day!

Your Hands by JJ Heller

This is the most beautiful song. I wish I knew how to add a link to the song itself, because it is amazing...haunting yet hopeful. It just moves my soul. And I couldn't have said it better myself. Please read these lyrics carefully....

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crookedly lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...I never leave
Your hands

When my world is shaking..HEAVEN STANDS! Again, referring to my second favorite book in the world, my Synonym Finder: Stand: last, continue on, continue to exist, persist, endure, be steadfast, be constant, be permanent, remain

How comforting to know that when MY world is falling apart, crumbling and shaking like a violent earthquake, heaven remains constant. One of my favorite names of God in the Bible is
I AM. Not I was. Not I will be. I AM.

He is.

Constant.

Steadfast.

Permanent.

And if that doesn't give me Hope, nothing will.

And So It Goes

Isnt' that a Billy Joel song? "And so it goes...and so it goes...and You're the only one who knows..."


Anyway. Jacob threw up all night Tuesday night...It is SO hard to recover when you miss a night's sleep! I mean, I slept some, but when your kid is sick, you don't really sleep...it's like one ear is open waiting to hear the beginning of the ralphing.


I am standing on the Word that no weapon formed against me shall stand, and that Doug and I will NOT get this. AND we haven't, so we won't. We were both a bit nauseous, and that was it for us.


You know, it's SO easy to get discouraged when you have a chronic illness. And for a long time my attitude was pretty much in the crapper. I have felt SO bad for SO long, I almost forgot what my "normal" was...But now, if it wasn't for my back...which is getting better...well, when THAT'S 100%, I will be close to MY 100%. And that hasn't happened in YEARS. Since before Jacob, and he's almost 4. It's about time!! Hallelujah!!

I am truly thankful for so many friends who lift me up in prayer. Thanks again!

The key is just hangin' on. It's like you're in this huge tug of war, and you don't have to hang on FOREVER, just a second longer than your opponent. So when chronic illness flairs into an acute attack, you have to just hang on...one second longer than it does.

"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." Author Unknown

A Picture is Worth at LEAST a Thousand Words!

A VERY dead end street!

Talk about shot-gun wedding!

Do you think this is supposed to say handicapped??

He he he he....

11th commandment?

And I thought I needed my beauty sleep!!

Fighting ANOTHER Battle.

Oh.My.Gosh.

At least my life is never boring. I'm so glad I waited til now to write this though, because God has shown Himself so awesomely in this situation, that this post will be totally different now. Last night it would have been a bunch of whining and poor me. {I do NOT do pain well. I can handle A LOT...the MG, the trach issues, the weakness, but NOT severe pain}. Anyway.

Saturday night about midnight-1:00 AM I popped another rib out. On the left side, up higher this time. There really isn't a way to descibe the pain. Just try to imagine your rib sticking out of where it is supposed to be, and the inflamation and nerve pain associated with it. Ew. My precious sister Pam deals with chronic back pain every day. I do NOT know how she does it. And she has such a gracious, godly attitude. Talk about inspiration!

My wonderful chiropractor had told Doug and I a long time ago that he's the only "Giovanucci" in the phone book (in podunk Allegan), and that if we needed him on the weekend to call him. So I called him Sunday morning...the pain was unbearable. He met us at his shop and got the rib back in. Hurts like a *beep* but at least I could walk again. My dear friend Shawn took Jacob today so I can rest and not hurt myself more. I love you Shawn. You are truly a sister to me.

So, if you live anywhere near Allegan, MI, and you need a chiropractor, go to Riverfront Chiropractic, to Dr. Luciano Giovanucci (Dr. Lu). He is AWESOME.

Anywho....last night I was just bawling and feeling sorry for myself. I'm like, WHY?!?!?! I had ONE good day, and then this happens! It's like God has something against me. I was so sad and in so much pain. Little did I know that Shawn and a few other ladies were praying over me...a LOT. And this morning, although I woke up in pain, I have a MUCH better attitude. They prayed against discouragement, and wouldn't you know I do not feel discouraged at all today! Glory to God!

Then, Shawn just "happens" to read a page this morning in a book that I also "happen" to have, called Praying the Names of Jesus by Ann Spangler. The name of Jesus featured here is Immanuel...God with us. The author writes (on p. 26). "What does it mean that God is with us? Surely it doesn't mean our lives will be easy. It doesn't mean we will be insulated from failure or doubt or that God will take our side in every argument. But is DOES mean we will never have EVEN A SINGLE STRUGGLE ALONE. It means the Lord will never withhold the help we need to do His will. It means that ultimitely we will come out on top even if we feel we're living most our life on the bottom" (emphasis mine).

Spangler continues a bit later: "Take a moment today to stop imagining yourself surrounded by all your difficulties and instead begin to envision yourself AS YOU REALLY ARE-- surrounded by the presence of your faithful God. Invoke His name--Immanuel" (emphasis mine).

So I just thought well crap on you satan. You're NOT taking this victory I've had; this huge, amazing, God-sent miracle medicine that has literally changed my ability to breathe. Never forget, friends, that the battle we fight is NOT against flesh and blood. It's not about my rib. Yes, the devil knows that pain is my biggest weakness. Why does God allow it? I don't know. But I DO know that I will try my best to glorify Him through it all.

And say thank you, thank you, thank you, to my dear friends who lift me up in prayer; some are so close, some far away, some I've never even met. Some that are warriors who cover me in prayer. Thank you. You are making SUCH a difference in the way I live my life. I could not win this battle without you.

Advair and Animals!

Okay. I have been MIA. THIS time it was for a pretty cool reason. I have been feeling AWESOME!!!!!! Now we are so happy we do the dance of joy! Di-di-di-di-da-da-di-di-di-di! Hey! Hey! Hey! Hey! {Any other Balki fans out there??}

After a lot of rigamarole and 5 plasmapheresis treatments, I wasn't doing much better. SO. The docs finally concluded there was SOMETHING else going on. (Ya think?) So they diagnosed me with reactive airway disease and prescribed Advair for me. Oh.My.WORD. To the maker of Advair: I love you. I will never forget you. I've got your back. Word.

After ONE dose I could breathe better. It's been 3 days now, and I'm breathing better than I have in YEARS. Like before-I-ever-went-off-my-medication-to-have-Jacob YEARS. It's AMAZING. I can breathe!!!! Yesterday I ran errands, in the car, without Doug, WITH Jacob. That has NEVER happened in Jacob's whole life. Whooo-Hooo!!!!!!


Now the animal part. Jacob has been a big boy going on the potty consistantly, and his reward was a puppy. We were going to get a 6 month old golden lab from the animal shelter. Doug checked it out, and yesterday we all went to see her. She wasn't adoptable unti next week to give the owners time to claim her. She was the youngest pup there. Or so we thought.


We walked in and told the girlie we were there to see the lab. She said they just got another lab in, a puppy-puppy, 10-12 weeks old, that very morning. A black lab. One look and I was a goner. Jacob named him Blackie. Here he is.

IIIIIIIIIII know. Is he not the cutest thing EVER??!?!? We took him right to the vet, he was nice and healthy, but only 8 weeks old. He is so precious. Jacob loves him...He loves Jacob... It's awesome.

We also got 6 more ducks and 2 turkeys.

So for those of you who haven't been keeping track: we now have 1 cow (food), 2 rabbits (pets), 2 grown ducks (pets), 4 baby ducks (pets), 2 baby turkeys (food), about 14 chickens (eggs), 2 grown dogs (pets) and a puppy! (Obviously pets). For those of you who have known me for a long time, I can just see you shaking your head. I live on a FARM, yo!

As you can see I have been a busy girl. I totally overdid it yesterday but I don't even care because it was so amazing. I will try to be a better blogger though...I like aiming for at least 6 days a week. I hope you all have something WONDERFUL happen this week!

Health Update

Okay: Yesterdays' treatment went perfectly, bruise and all. Dawn the girl that always does it, was back from vacation. Hallalujah! So I am done with this series of 5 treatments. After the pheresis, the nuero nurse came up and took a sputum sample (ohh yummy) and ordered a chest x-ray. They are sure something is going on besides the MG, becuse these 5 treatments should have me bouncing off the walls. Well, I'm clearly not bouncing.

So I go to my PCP and gab with him for a few, and he orders a medication for reactive airway disease which is like asthma, just not 24/7. Also ordered bloodwork, completel CBC, TSH, the usual suspects, but then added a mono test. Nice.

Got a call from the U of M...I do NOT have pneumonia, thank GOD!!! Nothing icky showed up in the sputum, well, except the sputum! Tim says, "all that's really on the chest x-ray is bilateral opaque striations due to atelectasis which we saw in January, so..." I was like, Um, can you repeat that in English?

Basically the bottoms of both lobes of my lungs are stuck together because they haven't been used in so long; i.e. my vital capacity is about 50% normally. Which means I can move 1/2 as much air as a person with healthy lungs can. This is not a LUNG disease, per se, it is a direct result of the myasthenia.

This is the treatment according to wikipedia (but the docs didn't seem terribly concerned because they've known about it since January, and haven't said anything to me):

Treatment is directed at correcting the underlying cause. People with chest deformities or neurologic conditions that cause shallow breathing for long periods may benefit from mechanical devices that assist their breathing. One method is continuous positive airway pressure, which delivers pressurized air or oxygen through a nose or face mask to help ensure that the alveoli do not collapse, even at the end of a breath. This is helpful, as partially-inflated alveoli can be expanded more easily than collapsed alveoli. Sometimes additional respiratory support is needed with a mechanical ventilator.The primary treatment for acute massive atelectasis is correction of the underlying cause. A blockage that cannot be removed by coughing or by suctioning the airways often can be removed by bronchoscopy. Antibiotics are given for an infection. Chronic atelectasis is often treated with antibiotics because infection is almost inevitable. In certain cases, the affected part of the lung may be surgically removed when recurring or chronic infections become disabling or bleeding is significant. If a tumor is blocking the airway, relieving the obstruction by surgery, radiation therapy, chemotherapy, or laser therapy may prevent atelectasis from progressing and recurrent obstructive pneumonia from developing.

So now I'm just on hold to hear about the next time I have to have pheresis...I'm hoping it's at least 2 weeks. They can't do the Rituxan until I'm better...Stronger. Haven't heard from insurance yet, so I don't know if they can do it or not anyway! Tick, tock, tick, tock.

I'm OH-so good at this waiting thing. (yah.)

Be Careful What You Wish For!

Has anyone ever said that to you? I've certainly heard it a lot. But it can be true: our words are powerful, and our petitions can have implications we have not prepared for.



For example, have you ever wanted to re-do an entire room? I wanted a beautiful walk in pantry. So we converted the old entryway to the house into a pantry. Hardwood floors, new drywall, paint, new light fixtures, new shelves, even crown moulding! And an adorable white screen door that you have to open to walk into the pantry. It's more beautiful than I could have imagined.



But do you know what we had to do to get it that way?? It was hideous. My husband has this amazing ability to see things in his head as they will be finished. I, however, do not. I just saw a huge mess that could never amount to anything.



He had to strip everything...the floor (I think we even saw the original dirt floor!!), the ceiling, walls, right down to the studs. It went from a pathetic, dingy room with bowed shelves nailed on the walls (with PANELING on the walls AND ceiling!) to absoluely bare nothingness. But it was not until it was broken down to nothing that it could be remade beautifully.



See where I'm going here???



"The Process of Holiness

We ask that God would make us holy. It is a good request indeed. But are we prepared to be sanctified by any process that God in His wisdom may call on us to pass through? Are we ready to be purified by affliction, weaned from the world by bereavements, drawn nearer to God by losses, sicknesses and sorrow? Alas! these are hard questions. But if we are not, our Lord might well say to us, “You don’t know what you are asking.”"


~ J.C. Ryle



I remember shortly before I got really, really sick, I submitted my life 100% to God, to do with what He saw fit to bring me in to closer relationship with Him. Friends, I got GUTTED! I went from a pathetic, dingy vessel to be stripped down....Lost my job, my church family, many of me "friends", my independence, my health, my ability to breathe normally, my singing voice, and a lot of baggage that needed to be let go.



I am still still very much in the process of being restored, but I tell you, even in my semi-finished state, I am a better person than I EVER was before. And it's only going to get better.

If you've been around me for any length of time, you will probably hear me talk about The Blessings of Brokenness by Charles Stanley. If you struggle with any kind of suffering or loss, you MUST read this book. It changed my life. God loves all of us too much to leave us where we are...too far away from Him. He will do whatever is necessary to bring you to Himself.

That may mean giving up a relationship He knows isn't good for you. It may mean finally kicking that habit you know isn't good for you. It may mean suffering. But don't EVER think God is punishing you. God doesn't PUNISH His children. He discliplines them, but that's not ever what I'm talking about here.



I'm talking about pruning, I suppose. If a tree had feelings, it probably wouldn't feel so good getting a bunch of your arms chopped off every year. Yet if it didn't, it would get overgrown and it's fruit or flowers wouldn't be as full and wonderful as they could be!

I'm not sure if God will heal me on this side of heaven or not. I know, however, in my heart, 100%, that I WILL be healed one way or another. I am on my way; I just may not get all the way there before I reach heaven. If God can use this broken vessel to reach out to someone before He fixes it, so be it. It is NOTHING compared to the glory that will be eventually, but certainly, be demonstrated in me. God Bless you all today, no matter where you are!

Original Notecards from Acrylic Paintings

Hey everyone,

My sister Lori has started her own business! She paints beautiful pictures, usually landscapes of animals; a lot of butterflies and flowers.

She had some notecards made up from her original paintings, and they are gorgeous! They are $10.00 a dozen if anyone wants some. Let me know and I'll hook you up! I have the butterfly ones and the orange flower ones. They are gorgeous!

Beef and Bruises and Bathrooms

WARNING: IF YOU'RE SUPER SQUEAMISH OR A VEGETARIAN OR A MEMBER OF PETA, SKIP THIS POST.

So we got our cow.

And she's cute.

Dang it.

Her name is Gracie. Jacob knows her from going to Auntie Shawn's house...we totally have to rename her. Maybe I should take a vote: lots of people have suggested names on facebook already: French Fry, UmmUmm Good, Supper Bell, etc. We're thinking T-Bone? Yes, we're going to eat her. Sorry if that shocks your sensibilities. I'm already getting attached. The only thing that will save me is that she has bad joints, so she would eventually have to be "put down" for her own comfort anyway.

But she's so stinkin' cute. She even moos cute. Sheez.

Secondly, the bruise part of the post. I'm FINALLY feeling better from the pheresis. However, this has to heal by Tuesday:

Purty, huh.

My vein blew Wednesday, but I had to go back for treatment yesterday...the vein held, but holy bruise Batman! I'ts creeping onto the top of my arm and everything. It's a bit tender! I need to ice it and hopefully it will be okay for my last treatment Tuesday. Last for a few weeks anyway, unless I start the Rituxan before then.

Finally....drumroll please.....Jacob is going potty on the big potty!!! Doug's mom watched him while we were in Ann Arbor yesterday, and she just sat him on the potty seat and he went! And he kept telling her when he had to! Just like that? So last night we get home and you'd think he'd go for me? NOPE. Not until the third time he told me he had to go anyway!! And today he's only had one "oops" and he was outside working on the truck brakes with Daddy, so he obviously had more important things going.

Shawn told me this morning when they brought the cow over that he had been watching the other kids in daycare use the potty, and understood that they didn't wear diapers anymore. Sweet!!

So that's what's new in my life. What's new in yours??

Fight Fight Fight!

"Look at the stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before." Jacob A. Riis

Well, I'm getting SOME of my fight back. I can't get too riled up or I about fall over. But I read this and thought, can you imagine the people who gave up at 99? Or even 100? Only one more smack with that hammer and their nemesis would have fallen. I couldn't live with myself. So I guess I have to just keep swinging.

Thank God He gave me a fighting spirit, because humanly, I would have been done with this battle loooooong ago. But it's like God inside me saying, "You can do this. I know it's tough. I know you don't like it. I also know you believe that everything you're going through is for a reason, and will somehow work together for your good. I love you my precious daughter, and I will never leave you or forsake you. Hang in there...better days ARE coming. You can DO this!!"

And so I do. I keep putting one foot in front of the other. If I fall I will get up. If I stumble I will brush off my knee. If I trip I will remove my obstacle. When I cry I will dry my tears. I will NOT be beaten by a disease. I will NOT give up. I will NOT give in. IT will NOT win.

The Joy of Pheresis

I'm sitting here trying to think of something nice and encouraging to say...some briliiant, uplifting sentiment to the down-trodden...and I'm coming up with nada. Zilch.

Yesterday was my third plasmapheresis treatment of five. They had needle issues yesterday... seemed like in ALL the patients. This poor guy next to me was having his 2nd or 3rd treatment ever, and his arm looked like an over-ripe banana. He was elderly, and I could hear him say "ouch" every time they tried. I felt horrible for him! When they did get a needle in and running, they had to run the machine at like 45...I usually run between 100 and 120 (which is fast, but that's best for me because it's less time my body is under duress).

Then it's my turn. The left arm (the draw arm), has a wonderful, big, easily accessible vein that has held up like a trooper, thank God. Well, after they jammed the needle it (jamming is actually better than being delicate, trust me)..the nurse bumped it. Holy pain Batman! These needles are like the size of a fork tiene, literally. Then it was backing it out and going in and getting it in the right place. Ug. Normally I've pretty tough, but this time I was already emotional when I got there, and tears were just pouring down my cheeks. Then the nurses feel even worse, and it kind of sets them on edge...It was just not great. Then, almost at the end, the "return" arm, my right arm, blew the vein, so they had to stop the treatment, switch the tubing and make my draw arm the return one! I know, most of you are probably like, huh?!?! Others are going...uh-huh!

But, I suppose I was "due" a not-so-stellar run since they've been going so perfectly.

Have to go back tomorrow for number 4, then next Wednesday for number 5, the last in the series. Hopefully by then we will have information from the insurance company regarding the Rituxan.

So I would appreciate any prayers for a better treatment tomorrow! Thanks...

Some of my Favorite Jacob Pics

Jacob's first big boy haircut. {sniff} 17 months old.

Christmas, 2007. Jacob LOVES his Santa suit, can't you tell?? He's 16 months old!!

Jacob and Daddy on an unusually nice October day in Michigan! Jacob is 15 months.

Stinker face!

Seriously. How cute is this child?? He had the shortest legs EVER. Yes, he's wearing shorts. And although the bib says Happy Easter, it's like September. He's about 13 months old.

My big boy. One year old!

This was the best swing EVER! A papasan swing, it went side to side OR back and forth. Jacob loved the side-to-side...He would always lean to one side and I swear he was going to fall out. This was shortly before we had to get rid of it because he was just too big. I hated selling that swing!!

Up from a nap, ready to chow 7 months old.

And these are just a few....Mommy loves you bubba!

All Consuming

K. So anyone out there with chronic disease who has figured out how to live with chronic illness and NOT let it consume you when you pretty much can't do anything but sit on the couch, or lay in bed. Hmmm??? Anyone? Bueller?

Ug. So sick of this. So sick of judgement and people looking at me like I'm crazy because I'm ready to do some higher risk stuff in order to feel better. Obviously what we've been doing isn't working, so....what choice do I have? I will not sit by and let this disease take me away from my family without a fight. Because I WILL.NOT.LIVE.LIKE.THIS.ANYMORE!!! I'm not going to sit around while my son is at someone else's house 4 days a week because I can't take care of him. To he!! with that. I'm going to get better or die trying. I'm DONE.

I'm feeling a little better right now...my brain isn't quite so foggy. (I'm getting my fiesty back, if ya hadn't noticed.) I'm tired though. Go figure. We ended up taking Jacob to the ER Friday night (after plasmapheresis) because he was screaming that his ear hurt. He NEVER complains about that. Got some antibiotics. Still has a yucky nose a bit, but his ear is "almost better."

So now it's a waiting game with the insurance company to see if they will pay for the Rituxan. If not, we have to think about the chemo/stem cell option, because the chemo is actually super cheap compared to the Rituxan. Nice.

So. Happy Monday. Whoo.

Update

Two plasmapheresis treatments down, one to go, or maybe 3! Ya, I know, sounds like Chicago math.


I've had 2 treatments. My neuro actually came up to see me while I was getting a treatment yesterday. I think I kind of freaked him out when I e-mailed him about completely killing off my own immune system with chemo and then getting a stem cell infusion from the umbilical cord blood that we saved when Jacob was born. (First we'd have to check if there was enough for me to use AND leave some for him if he ever needed it...if not, I would not do it.)


He thought we should do the Rituxan before we do anything with a "5-10% mortality rate" like the stem cell thing. SO. Today, (Saturday) after 2 treatments, I still feel like crap. We will go Wednesday, and probably for 2 more treatments the following week. Dr. Teener thinks he can get the insurance company to pay for it (it's RIDICULOUSLY expensive). If not, I'll have to sell a kidney or something....but then again, who would want MY organs, right?

I'm just SICK of living this way! My brain is always in a fog, I'm always tired, I hurt all over, my relationships are suffering, my son is suffering....I might as well be in prison or a nursing home or something. I'm trapped within my own body. The "me" on the inside is SO not like the "me" on the outside...I just can't take it anymore.

I will be the 4th MuSK+ MG patient that Dr. Teener has used Rituxan on, and he has had promising results. If this DOESN'T work, We'll be looking at the stem cell thing, I think. I can't live this anymore. Not when I know I can feel better.

So once I've done completed the course of pheresis treatments, and the insurance approves the Rituxan, I will have the first infusion at the U of M and stay overnight to make sure I don't have any funky reactions. If everything goes well, I will have 3 more infusions, one on the same day each week for 3 weeks (like every Friday for 4 weeks total). Then I should be able to go WITHOUT pheresis, and cut my CellCept in half. I cannot even FATHOM right now 6-9 months without pheresis. The Ritusan infusions are about 30 minutes, and as long as the first one goes well, I can have the other ones done at a local hospital. After 6-9 months, we do another round of Rituxan. I'll keep you posted.

I am FIRED Up today.

Okay. If I hand you a perfectly crispy, nice, clean, just off the press $20.00 bill, what is it worth? Yup. Twenty bucks. If I take that perfectly crispy, nice, clean, just off the press $20.00, throw it on the floor, stomp on it, crinkle it around a bit, get it all dirtied up, how much is it worth then? Correct. Twenty bucks. Okay. Now say I give you a really old, crumpled, been around the block a time or two $20.00 bill. It would be worth...? Very good! Twenty bucks.

So how is it that our illustrious President can put a numerical value on people depending upon their age in regard to health insurance? Oh my GOSH do I have issues with that man. I guess in this case I'm glad I'm only 39 and chronically ill instead of 69 and chronically ill, because I'd be getting cut off pretty quick.

Do you know what you get when you wrap up a piece of dog turd in a sealed container, add beautiful paper, lovely bows and ribbons, a nice card...You get a health care plan that many think looks lovely, but when you open it, it's full of,....well, you get the idea.

On to my second rant, which also has to do with the quality of life, or the sanctity of life. There is a local news story here where this man, probably in his late 30' early 40's, was left to watch their 2 year old while mom went to the grovery store. While she was gone, daddy of the year kneeled on his daughter's chest until she was dead. Then he threw her in the garbage. When mom got home, dad was sitting on the edge of the daughters bed, with the door mostly closed, talking to her as if she were just about to fall asleep. (When she was already dead in the dumpster.) Excuse me, but what kind of sick son of a b!tch does that?? Then he had a coke (and I don't mean coca cola) party immediately afterward.

And mom. Seriously???? You don't check on your daughter until the next morning, find her gone and report her missing? If I'm ever away from Jacob and he's sleeping when I get home (yah which has happened like once??) I will go in and take every cover off and inspect hin and make sure he looks clean and comfy and perfect. What kind of mom lets her boyfriend/husband/whatever he was have a big ol cocaine bash while SHE THOUGHT her daughter was in that apartment?

This world makes me SICK. SICK. People dealing with chronic illness REALLY need one more stressor in their life (like worrying about when their health insurance will be cut off). People with infertility cry every day because their arms are just aching for a child, and for some selfish reason, this creten decides to see what happens if he kneels his 170 pound body on top of her 20 pound one. If you ask me, there is a special.place.in.hell. for people like that.

Barring abortion, which is the greatest atrocity to human life, when did the attitiude toward human life become so... blase? So indifferent and apathetic? And yet these are the same people who turn the channel when they show pictures of animal cruelty. Of course that's horrible, and those animals should be protected. But when society shows more concern for their pets that they do for their fellowman.....


And for my final diatribe. Have you seen the father who buried his son who was killed in military action serving his country? Did you see those idiots with signs saying "GOD HATES THE U.S.A." WAR IS MURDER, and all those other lovely things? This man just.lost.his.son!!! And these gutless cowards are hiding behind the first amendment, part of the constitution of the Unisted States that these very men they protest fought, bled and died for. NOW this father has to pay the legal fees of these freeeloading recreants. What the he!! is wrong with this country.

What I say is let those protesting the loudest be the first on the battle line when it comes down to brass tacks and the amazing men and women of our military put their lives on the line. So they don't agree with war...I don't in all circumstances either, but in my opinion, there is no nobler task that to serve your country. To be willing to write a blank check, which may be cashed in with your life written on it. I need to stop before my blood pressure gets up any higher.

Let me just end by saying thank you. Thank you to the men and women AND their families who serve this country with gladness, with honor, with pride. Who make sacrifices every single day so that you and I can walk around sipping our lattes and not worrying about nuclear war. (Okay, so I don't walk around sipping my latte, but you catch the drift.)

And pray for this country. I am so ready for Jesus to just come back and end all of this suffering.