Plasmapheresis Closer To Home!

I am very excited to report that with the help of a wonderful friend and former nurse, I have found a place where I can get plasmapheresis done the way I want it done (no port, fistula or catheter), just UNDER an hour away. Right now I have to travel 300 miles round trip, which, with a 4 1/2 year old, makes 3 hours each way. Plus the treatment, plus a meal on the road.

NOW, we can drop Jacob off at my parents (who will FINALLY be home today from Florida), who actually live on the way to the facility I'll be going to, drive another 12 minutes to the hospital, have my treatment (1 1/2 to 2 hours total) back to get Jacob and home all in about 4 hours. Whoo-Hoo!!! I have been searching for this for years.

There are plenty of facilities who do plasmapheresis, but they all required a port or fistula or catheter. No one would do it just in my arm veins. Well, now they will. OH HAPPY DAY! This is seriously amazing news for me. To cut the physical stress of the 3 hour drive, with Jacob, the 3 hour drive home, the gas money it takes, the money to eat out, and going once every 3 weeks...

Compare that to a four hour trip total, no eating on the road, 1/3 of the gas, Doug wouldn't even have to take a whole day off of work! PLUS, I could get it done every other week, which I'm sure would be more beneficial, with so much less stress. Amazing. This is the best news since I thought I was going into remission from Rituxan. Although we are certainly hoping for a better outcome.

Speaking of...having a hard time today. I was up a lot during the night with Jacob, because first his dog "had the cough-uhs" and so he couldn't sleep. So Doug put Blackie in our room. Then Jacob came in because he couldn't sleep without Blackie. And he was hungry. So here we go, in the middle of the night, downstairs (and only because my insulin pump was about to run out in like 12 minutes, otherwise he would've stayed in bed) gave him a snack, I changed my pump, and when we got back upstairs, Blackie went back in Jacob's room and Jacob was told what would happen if he got up again. (Nothing pretty, let me tell ya).

So because I'm extra tired, and still emotionally recovering from the disappointment of the Rituxan...it's already been a trying day. Still trying to get more help. Talked to a local pastor today who wants to come out and meet with me...but he just had foot surgery, so it will be a couple of weeks. (So if you think of it, say a little prayer for Pastor Chad and quick healing for his foot).

It will be a while before Doug and I can hire someone (which we haven't even talked about because he's been so darn busy, but I have it all worked out)...and Love INC is in the works... it's just that everything takes time. So I'm still pretty much on my own right now, except for my favorite cousins, Kerry and Karen.: ) And a very kind lady from the GAPS program who hasn't been able to come out for a while for one reason or another (all on my end, not hers).

So I definitely still need lots of prayers to make it through, and get done all that I need to: (bills, budget, phone calls to messed up bills and insurance, not to mention raising and homeschooling a child and taking care of 3 dogs). Yup. That's me.

Thanks!

New Look and Other Fun Stuff

Welcome to my new blog! Don't you just LOVE the design? Big kudos to Kate from Mommy Monologues. She is a FANTASTIC blog designer, an absolute JOY to work with, and SO reasonable price wise. (Not the she's UN-reasonable any other way! : ) But really....check out her stuff. She's AWESOME.

Secondly, talking to the neurologist today about Rituxan. I'm a little nervous, PLUS I've having my first pheresis treatment in over 2 months. Please pray that everything needs to go as it should.

Finally, here are some FUNNY "Kids say the darndest things:"

1) NUDITY
I was driving with my three young children one warm summer evening when a woman in the convertible ahead of us stood up and waved. She was stark naked! As I was reeling from the shock, I heard my 5-year-old shout from the back seat, 'Mom, that lady isn't wearing a seat belt!'

2) OPINIONS
On the first day of school, a first-grader handed his teacher a note from his mother. The note read, 'The opinions expressed by this child are not necessarily those of his parents.'

3) KETCHUP
A woman was trying hard to get the ketchup out of the jar. During her struggle the phone rang so she asked her 4-year-old daughter to answer the phone. 'Mommy can't come to the phone to talk to you right now. She's hitting the bottle.'

4) MORE NUDITY

A little boy got lost at the YMCA and found himself in the women's locker room. When he was spotted, the room burst into shrieks, with ladies grabbing towels and running for cover. The little boy watched in amazement and then asked, 'What's the matter, haven't you ever seen a little boy before?'

5) POLICE # 1
While taking a routine vandalism report at an elementary school, I was interrupted by a little girl about 6 years old. Looking up and down at my uniform, she asked, "Are you a cop?" "Yes," I answered and continued writing the report. "My mother said if I ever needed help I should ask the police. Is that right?" "Yes, that's right," I told her. "Well, then," she said as she extended her foot toward me, "would you please tie my shoe?"

6) POLICE # 2
It was the end of the day when I parked my police van in front of the station. As I gathered my equipment, my K-9 partner, Jake, was barking, and I saw a little boy staring in at me. 'Is that a dog you got back there?' he asked.
'It sure is,' I replied.
Puzzled, the boy looked at me and then towards the back of the van. Finally he said, 'What'd he do?'

7) ELDERLY
While working for an organization that delivers lunches to elderly shut-ins, I used to take my 4-year-old daughter on my afternoon rounds. She was unfailingly intrigued by the various appliances of old age, particularly the canes, walkers and wheelchairs... One day I found her staring at a pair of false teeth soaking in a glass. As I braced myself for the inevitable barrage of questions, she merely turned and whispered, 'The tooth fairy will never believe this!'

8) DRESS-UP
A little girl was watching her parents dress for a party. When she saw her dad donning his tuxedo, she warned, 'Daddy, you shouldn't wear that suit.'
'And why not, darling?'
'You know that it always gives you a headache the next morning.'

9) DEATH
While walking along the sidewalk in front of his church, our minister heard the intoning of a prayer that nearly made his collar wilt. Apparently, his 5-year-old son and his playmates had found a dead robin. Feeling that proper burial should be performed, they had secured a small box and cotton batting, then dug a hole and made ready for the disposal of the deceased.
The minister's son was chosen to say the appropriate prayers and with sonorous dignity intoned his version of what he thought his father always said: 'Glory be unto the Faaather, and unto the Sonnn, and into the hole he goooes.' (I want this line used at my funeral!)

10) SCHOOL
A little girl had just finished her first week of school. 'I'm just wasting my time,' she said to her mother. 'I can't read, I can't write, and they won't let me talk!'

11) BIBLE
A little boy opened the big family Bible. He was fascinated as he fingered through the old pages. Suddenly, something fell out of the Bible. He picked up the object and looked at it.. What he saw was an old leaf that had been pressed in between the pages.
'Mama, look what I found,' the boy called out...
'What have you got there, dear?'
With astonishment in the young boy's voice, he answered, 'I think it's Adam's underwear!'

NOW IF THIS DIDN'T BRIGHTEN YOUR DAY, GO BACK TO BED AND FORGET IT !

Tomorrow Is A Big Day

Tomorrow we head to Ann Arbor for the first time in 2 months. Haven't been able to say that in a long time! We're going to talk to Dr. Teener first (I have a ton of questions, well 20 to be exact) about the Rituxan treatment....I spent most of the day yesterday studying stuff about it...

I now know way more about cellular immunology than I ever thought I would...but it makes sense in an odd way.

Plasmapheresis takes antibodies out of my blood by removing the plasma and putting synthetic plasma from "normal" people, so the symptoms are alleviated. But as soon as the treatment is done, my body continues to produce antibodies.

Rituxan works on a cellular level, destroying B-cells (we have T-cells and B-cells in our immune system) therefore the possibility of medical remission is a very real one. If the B-cells are the ones that are out of control, and the Rituxan wipes them out, no more MG. Theoretically anyway.

I think the best thing I found out about this treatment is that is seems to work best on MY kind of MG. YAY! AND the incidence of PML is really, really low. In fact, I couldn't find any documented cases of PML in someone with MG who was treated with Rituximab (Rituxan).

What I am asking for specific prayer against other than the PML (Progressive multifocal leukoencephalopathy) is that Rituxan can make some crazy things happen because it works at the cellular level. One concern is the varicella zoster virus (chicken pox and shingles). Rituxan can like "reawaken" or whatever dead viruses in your body...so I could get shingles. But I won't. I'm just saying. Ya'll can pray against that.

I've also been exposed to TB (in 1999); I never GOT TB, and was treated for it anyway. But I do have a scar bubble in my lung that is encapsulating a TB germ....But again, TB seems to be one of the things Rituxan WON'T reawaken.

Anywho. I will keep you posted. Probably won't post tomorrow as I am having plasmapheresis as well. Going to see if that gives me any kind of pick-me-up. Thanks for your prayers!!

Here We Go

I HATE driving in the snow. Well, technically I won't be DRIVING, but you know what I mean. We are getting pounded with lake effect snow, and have to drive 150 miles to the hospital. I would much rather just curl into a ball and forget this whole thing.

But, it's time to put on my big girl panties and suck it up.

So tomorrow will be a long day. Starting at 10:00 AM with a visit to the pulmonologist. It's very difficult to do pulmonary function testing with a trach (especially a trach without a cuff)....so it will just depend on what they can actually test to see if they can determine if this is restrictive airway disease (the MG, which I think is the majority of the problem, but who am I? I'm just the one whose BODY THE LUNGS ARE IN thank-you-very-much) or reactive airway disease (asthma). I'm sure it's some of both: I can't imagine having breathed 10 years' worth of unfiltered air into my lungs hasn't done ANY damage.

Then it's an 11:30 with the neurologist...so many questions. After all that, I get to have fork tines shoved into my arms and lay motionless for 90+ minutes and have all my blood drained out. Wooo--Hoo!!!

Whatever. I'm actually looking forward to talking to Dr. Teener because it's been forever. I really need to write everything down so I can remember what I need to. SO. I very much appreciate your prayers and support. Thank you for all the kind comments and encouragement. They help MORE THAN YOU KNOW.

“ For My thoughts are not your thoughts,
Nor are your ways My ways,” says the LORD.

“ For as the heavens are higher than the earth,
So are My ways higher than your ways,
And My thoughts than your thoughts.

“ For as the rain comes down, and the snow from heaven,
And do not return there,
But water the earth,
And make it bring forth and bud,
That it may give seed to the sower
And bread to the eater,

So shall My word be that goes forth from My mouth;
It shall not return to Me void,
But it shall accomplish what I please,
And it shall prosper in the thing for which I sent it.

“ For you shall go out with joy,
And be led out with peace;

The mountains and the hills
Shall break forth into singing before you,
And all the trees of the field shall clap their hands.

Instead of the thorn shall come up the cypress tree,
And instead of the brier shall come up the myrtle tree;
And it shall be to the LORD for a name,
For an everlasting sign that shall not be cut off.”
Isaiah 55:8-13

P.S. I'm listening to David Phelps "No More Night" Amazing!!!

Chorus:
No more night
No more pain
No more tears
Never crying again.
And praises to the Great I AM
We will live in the Light of the Risen Lamb!

Bridge:
See over there
There's a mansion
That's prepared just for me
Where I will live with my Savior eternally!

And the Fun Continues....

Got a call from Ann Arbor today, and they want me to go to their pulmonologist Friday morning BEFORE I see the neuroogist and have pheresis. They're going to do another ABG (arterial blood gas) and try to do some pulmonary function tests (which is almost impossible without a cuffed trach). SO, we (Doug, Jacob and I) will be headed down tomorrow afternoon, mid-lake-effect snow storm, to stay at a hotel so we don't have to get up at 4AM to get ready and drive down Friday. It would WAY too long of a day for me, let along Jacob. Who knows, maybe we'll leave early enough and get to go to Cabela's or something. Doubt it. But whatever.

So. They need more pulmonology info so the insurance company will pay for the cough assist machine. This is the only immediate step before the last step they are suggesting: putting me on ventilator at night to rest my muscles and stretch out my lungs. Sounds just great, except for the fact that this is what I've been fighting for the last 4 years because in order to do this, I would have to have the Shiley trach. (Just think of shoving a sharpie-sized marker with a swimmie on it through a hole in your neck. Then every time you turn your head you cough and hack and need suction. Oh, and there's the lovely 1 inch padded band that has to go around your neck, to hold the monstrosity in place.) Talk about reduction in quality of life. Yes, it really is that bad.

But what about the Rituxan, you ask? Ah, yes....the wonderdrug that may take 6 months to kick in (which I was aware of, Cellcept is the same way). The docs don't think that I will improve quickly enough to feel any better until it kicks in, and that would mean I would be susceptible to respiratory crisis at any moment. And I can't live like that. My family can't live like that.

So I am asking that you would please pray that I get this cough assist thing, and that it works. My only other option will be that horrible Shiley trach. I haven't been sleeping well...I'm exhausted already....

The GOOD news is that Ann Arbor is sending a referral TODAY to the homecare place so hopefully by next week I will have access to the Medical Social Worker. SO. I'll keep ya posted.
Thanks.

Ann Arbor Yesterday

Ug. I hate going to Ann Arbor to get phresis on an "off'" day. For example, 98% of the time we go on Friday. This time, for various reasons, we went yesterday (a Monday). I don't know if it was because of the holiday weekend and people took an extra day off or what.

The FOUR main players (people who know me the best) including our beloved Dawn, who is my nurse most of the time, were gone. GONE. That left four people who were physically capable of doing the treatment: one woman who has done my pheresis once or twice, one who did it once, couldn't get the needle in my EASY arm (had to take the thing out 3 times!), one who has never done it, and one part-timer who has run me once before. I got the part timer.

This woman is completely capable, and is a very nice, compassionate person. She just doesn't know ME, how my veins run, etc. Both of my anicube (sp?) veins (the vein where your elbow bends) run crookedly. I know, I know. NOTHING about me can be simple and straightforward.

So the needle wasn't right in my draw arm (where they take the blood out) from the beginning. I could tell...it just wasn't right. I can't tell you how I know that, or how to fix it, I can just tell if it's not right. So for the first 45 minutes, we played with the needle (the width of a fork tine) pushing it in and out every few minutes to see if we could get a better position. NOT happening.

Since my return arm (where the blood with the new plasma goes back into me) was primo, she switched it and made THAT my draw arm. (The draw arm needs the best position.) After another 30 minutes or so, the needle that was not right from the beginning completely faded out, and she had to stick me again, with an angio needle (slightly smaller in width, but longer and sharp as a scalpel). That lasted about 30 minutes, and I wasn't completely done with the treatment yet (one bottle to go) but I was like that's it. I'm DONE! So we stopped. I normally run in about 1 hour and 10 or 15 minutes. This had been over 2 hours. It was NOT fun.

Now I have a hard little ball in my left anicube vein (the draw arm) and I don't know if it's a scar tissue blob or a clot. Nice. And just think, I get to do his every three weeks! Whoo-Hoo!!

I love my life I love my life I love my life.

Funny Friday!

Off to Ann Arbor today, so here's a funny!

If you are 30, or older, you will think this is hilarious!

When I was a kid, adults used to bore me to tears with their tedious diatribes about how hard things were. When they were growing up; what with walking twenty-five miles to school every morning.... Uphill... Barefoot... BOTH ways… yadda, yadda, yadda

And I remember promising myself that when I grew up, there was no way
I was going to lay a bunch of crap like that on my kids about how hard I had it and how easy they've got it!

But now that I'm over the ripe old age of thirty, I can't help but look around and notice the youth of today. You've got it so easy! I mean, compared to my childhood, you live in a Utopia!

And I hate to say it, but you kids today, you don't know how good you've got it! I mean, when I was a kid we didn't have the Internet. If we wanted to know something, we had to go to the library and look it up ourselves, in the card catalog!!
There was no email!! We had to actually write somebody a letter - with a pen! Then you had to walk all the way across the street and put it in the mailbox, and it would take like a week to get there! Stamps were 10 cents!

Child Protective Services didn't care if our parents beat us. As a matter of fact, the parents of all my friends also had permission to kick our butt! Nowhere was safe!

There were no MP3's or Napsters or iTunes! If you wanted to steal music, you had to hitchhike to the record store and shoplift it yourself! Or you had to wait around all day to tape it off the radio, and the DJ would usually talk over the beginning and mess it all up! There were no CD players! We had tape decks in our car. We'd play our favorite tape and "eject" it when finished, and then the tape would come undone rendering it useless. Cause, hey, that's how we rolled, Baby! Dig?

We didn't have fancy crap like Call Waiting! If you were on the phone and somebody else called, they got a busy signal, that's it! There weren't any freakin' cell phones either. If you left the house, you just didn't make a call or receive one. You actually had to be out of touch with your "friends". OH MY GOSH!! Think of the horror... not being in touch with someone 24/7!!! And then there's TEXTING. Yeah, right. Please! You kids have no idea how annoying you are.

And we didn't have fancy Caller ID either! When the phone rang, you had no idea who it was! It could be your school, your parents, your boss, your bookie, your drug dealer, the collection agent... you just didn't know!!! You had to pick it up and take your chances, mister!

We didn't have any fancy PlayStation or Xbox video games with high-resolution 3-D graphics! We had the Atari 2600! With games like 'Space Invaders' and 'Asteroids'. Your screen guy was a little square! You actually had to use your imagination!!! And there were no multiple levels or screens, it was just one screen... Forever! And you could never win. The game just kept getting harder and harder and faster and faster until you died! Just like LIFE!

You had to use a little book called a TV Guide to find out what was on! You were screwed when it came to channel surfing! You had to get off your butt and walk over to the TV to change the channel!!! NO REMOTES!!! Oh, no, what's the world coming to?!?! There was no Cartoon Network either! You could only get cartoons on Saturday Morning. Do you hear what I'm saying? We had to wait ALL WEEK for cartoons, you spoiled little rat-finks!

And we didn't have microwaves. If we wanted to heat something up, we had to use the stove! Imagine that!And our parents told us to stay outside and play... all day long. Oh, no, no electronics to soothe and comfort. And if you came back inside... you were doing chores!

And car seats - oh, please! Mom threw you in the back seat and you hung on. If you were lucky, you got the "safety arm" across the chest at the last moment if she had to stop suddenly, and if your head hit the dashboard, well that was your fault for calling "shot gun" in the first place!

See! That's exactly what I'm talking about! You kids today have got it too easy. You're spoiled rotten! You guys wouldn't have lasted five minutes back in 1980 or any time before!

Regards,The Over 30 Crowd

Bad News, Good News, No News

Well, bad news first. It seems that NO ONE ON THIS EARTH has the cable that I need to make my fancy cool phone work with my computer. SO. I will be returning it tomorrow before the trial is over and I get nailed down for a 2 year contract. Argh. However, I have NOT given up...I WILL find something that works out in the sticks other than dial up, AND for the right price. I WILL!!!!

Good news: Pheresis went like a dream...well, as dreamy as lying in a hospital bed for one hour and five minutes with needles in you arms can be! Yup...only one hour and five minutes! The treatment just FLEW....I think that was the fastest ever. Sweet! So we went to Cabela's (how could we NOT? We were only 20 miles away!) and I walked around waaaay too much. I did, however, find the BEST deal. The cutest little green Florida hat that was originally $30.00 (like who on earth would pay 30 bucks for a little canvas hat with a button and a few stripes???) for {drum roll please.......} seventy-five cents. YUP. So I got two of them. $60.00 worth of hats for $1.50. That has to be some kind of record. THEN I got some REALLY cute Columbia sandals in pink for $10.66!!! I know, I'm amazing.

K. So I got almost no sleep, then had to go to the hospital for the MRI. Oy vey. Hurry up and wait. I get there at 7, as instructed, for my MRI at 8:30. I think they finally started taking me to the MRI area at about 8:45, and then they have a little holding area, where we sat for about 30 mintues. Nice. My nerves were stretched thin enough as it was....they started popping!

The resident anesthesiologist (RA for future reference) was very kind and thorough, and explained everything. They would take me to the holding area, and wait to put me out til we got into the actual MRI room. Okay, whatever.

So we get to the holding room and RA reaffirms the waiting to be knocked out theory. Then this other guy, all in scrubs, comes in and kinda stares at me. So I stare back. I could already tell he was funny. I think his name was Bruce. He said something to the RA about getting things started. I said, "So you're the Anesthesia Man?" He said, "What day is it, Thursday? Yup, Tuesday and Thursday I'm the Amesthesia Man. Monday, Wednesday and Friday I'm the Anesthesia Woman." Okay, maybe you have to have no sleep and frayed nerves, but it was hilarious. Then he asked if my hair was purple. I said, yup...and I can tell ya how to do it...you might look pretty cool with a couple of purple stripes....His hair was gray and kind of all poofy when he took the scrubs hat off. Guess you had to be there, but it was funny.

AM: "So I'm gonna take that trach out real quick and see how big of an opening you have."

Me: "While I'm AWAKE?"

AM: "I'll put it right back!"

Me: "Why do you have to do that? It's a 10. You can use a number 6 ET Tube....trust me, I know, I carry one with me!"

AM: "Okay, you talked me out of it."

So RA tells AM (Anesthesia Man) that we're waiting to put me out til we get to the room. AM says, "Why would we do that?" RA says: "Well, we were talking about it in the lounge the other day and that's what most people are doing."

Enter NG (New Guy), bringing in a very flat, very hard looking plastic table with straps all over it. "I've never done that...I think I've seen it done that way once."

AM: "I've done this for 20 years and never did it that way. How many people were in the lounge? Two?"

Me: "You're gonna put me on that thing and TIE ME DOWN??"

RA: "We'll get a wedge and make you as comfortable as possible." Yah, as confortable as you can be strapped down to cement! To AM: "No, really, there were a bunch of people in the lounge."

Me, raising hand: "I'll settle this...I vote for here, because I'm starting to flip out!"

Apparently that's all you have to say cuz the next thing I know I feel a little sting in the IV and I'm in la la land. I woke up in recovery about 11:30. They still had the ET tube in, must have had the cuff up because I couldn't breathe very well. They swapped out the trach.... I coughed it out had to shove it back in with no mirror or anything...Good thing I was half out of it. They didn't put it in right anyway. The nurse recovery was like, "Does that happen often?" I just stared at her...not-so-nicely.

So I'm itching to get out of there ASAP. I could barely walk, but I managed to get to the restroom after Doug helped me put my clothes on, so they let me go. I got coffee right away, and then we got in the car and I fell asleep. Stopped for food in Marshall, and I looked SO stoned. My eyes were half shut and I could NOT open them any further. I was half there and half out. Dont' remember eating, really. Back to sleep in the car, had to go get Jacob from Wayland, then home. Felt a teeny better, but today I feel like I've been severely beaten.

They told me I would be tired and sore. Apparently they had to manhandle me. Nice. RA said even though you're "sleeping" you can still move around, thus the straps and stuff. I have a bruise about the size of Jacob's feet on my arm from the blood pressure cuff. Yes, I said blood pressure cuff. That thing got so tight I thought my arm was going to fall off. I don't know how high they thought my blood pressure was going to be....it's like it was rated to start at 500 or something! And of course they have to do this every 15 mintues. One more reason to get out of there in a hurry!

So I'm a bit battered and bruised, but I'm alive, the MRI is done.

AND FINALLY the no news: which is what I have from the MRI. If I don't hear Monday I'll call.

Sorry so long!!

FINALLY!

I finally have my MRI scheduled! Thursday, October 22. The MRI appointment girly called to set up an appointment, and she's like, "Do you have a particular day that would work better for you? We do the MRI's with general anesthesia at 8:30 in the morning."

I was like, and here I thought the planets had to align before I could get in, that the "forces that be" couldn't figure out what to do with me because I have a trach. Oh the drama.

On a lighter note, my son is hysterical.

These are a few of the conversations we've had lately.

Jacob, screaming like a steam engine choo-chooing: "Whooooooooooooooooooooooooooooo!"
Daddy: {very loudly} "Jacob, this is loud! You need to use your inside voice. {very quietly} This is your inside voice. {very loudly again} This is a loud voice. Do not keep getting louder and louder."
Jacob: "You mean fortisimo?"
Daddy, looking at Mommy for an interpretation. "Did he just say fortisimo?"
Mommy: "Yes, do you know what that is?"
Daddy: "Nope. Great. My 3 year old is smarter than I am."
Mommy: "It's a musical term meaning to play loudly."

Unbelievable. He just turned 3 less than 2 months ago.

Mommy: "Jacob, Jacob, Jacob. {who had been outside with Daddy playing in who knows what} you are dirty, dirty, dirty."
Jacob: "I certainly am!"

Certainly?????

Mommy: "Okay bud, here's a bunch of shapes we can play with."
Jacob: {holding up a parallelogram} "Is this a parallelogram?"
Mommy: {slack jawed} "Why, yes it is, Jacob!"

{crickets chirping}

This is my favorite: I have been trying to get Jacob to understand that when he makes a choice, he has to stick to it, and that his words have meaning. He is a typical 3 -year old in that he will say, "I want to eat." We get all set to eat, and he says "I don't want it!" And back and back and forth. Well, USED to go back and forth. Not anymore!

He's kind of like me in that he's a word nerd, and loves words. He'll hear a word and say, "What does that mean?" if he doesn't know. So I've been telling him (maybe 1/2 dozen times or so) that his words and actions have consequences.

Mommy; "Jacob, do not throw that [plastic] rock in the house again!"
Jacob: "Okay Mommy."

Jacob, a minute later: "Mommy, I did something."
Mommy: "What."
Jacob: "Only a glass." {looking at me like, Chill, Mom...YES, he started calling me MOM!!!}
Mommy: "SHOW ME."
Jacob takes me to Daddy's water glass, perfectly turned upside down on the carpet. It HAD been full of water.
Mommy: "Did you throw your rock again?"
Jacob: "Yes."
Mommy goes to get the spoon, and Jacob gets a spanking.
After a few moments of hysteria at the horror of being disciplined, I call Jacob over to talk.
Mommy: "Why did Mommy spank you?"
Jacob: "Because I didn't listen. I threw my rock."
Mommy: "That's right. You directly disobeyed Mommy. What happens when you disobey Mommy?"
Jacob: "Consequences!"

Life is NEVER dull around here!!!

Update from today

Hey all,



Well, today was pretty horrible. We had "access" problems. Meaning vein and needle problems. The one vein in my left arm that was ALWAYS cooperative wasn't even playing nice. It hurts sometimes during the treatment, kind of like a bad ache. If I'm running well I just suck it up and carry on. But today. Ug. The left arm took 3 times. They ran the machine each time and they worked for like 2 minutes. Then it's mess with the needles, try to get the "sweet spot", then yank it out cuz it's not working.



They finally ended up in my hand, but had to use a super small needle, so I was running really slow. The hand was burning, and my "good" arm was hurting more than usual. After almost 90 minutes there, 45 of actual treatment running, I was only 1/3 done. I was like "Stop." I couldn't take the pain in my arm anymore, and it would have been probably 2 more hours. No way Jose.



So I have to go back next Friday for more pheresis since this didn't really do much.



Dr. Teener came in and talked to me about the MRI, and said I could probably do the open one...it has less pixels, but for this particular thing should be fine. Only trouble is it takes longer, and I can't breathe when I lay flat because of the MG. I sleep with a wedge and 3 pillows at night. SO...if they can't prop me up a little, I will have to be sedated, in which case I will be going to Ann Arbor so I'm right there if anything happens. That will probably be an overnight trip and a treatment then the next day. Told me to double my pain meds because they aren't really working. If THAT doesn't work, we'll have to go heavy duty drugs, which I'm not crazy about. I don't want to be loopy taking care of Jacob.



Finished my stellar day at Walgreens buying a cane to help me walk. Ain't life grand.