Today is Monumental!!

Why, you ask? Well, it's Martin Luther's birthday.  (No, not Martin Luther King, just Martin Luther. If you don't know who that is, ask a Calvinist. LOL) That's lovely, but that's not why this day means SO much. 

And, on this day in 1943, Japanese troops evacuated Guadalcanal, which ended the epic WWII battle on the Solomon Islands in the Pacific.  But that's not it either. 

On February 9, 1951, the St. Louis Browns signed pitcher Satchel Paige, aged 45.

But what is REALLY significant, in MY life, on THIS day??

It has been ONE YEAR since my last plasmapheresis treatment!!!!

Now if some of you don't know what plasmapheresis is, let me tell you.  (Warning, if you're squeamish, skip to the next paragraph!)  I used to have to go to the hospital two times, a day apart, every four weeks to have pheresis.  They would stick a large bore needle (like the size of a fork tine) into each arm.  Out of one needle they would draw out 150% of my blood volume, and run it through a machine (like a fancy centrifuge), spin out my plasma, add albumin synthesized from human plasma, and put my blood back into my body.  I have had this procedure done over ONE THOUSAND FOUR HUNDRED times in the last 17+ years.  Yes, 1,400!  If you're never had this, or dialysis, or anything like this, it's truly hard to imagine how hard this process is on your body.  And I had to have it that often just to *function*.
You can read more about plasmapheresis HERE.  (At the time of the post I could go *maybe* up to six weeks, but my function would decline.)

So how on earth have I managed to go an entire year, when normally I would have had at LEAST 26 of these treatments, you ask?  Let me tell you!!!  I was blessed, absolutely, 100% BLESSED to be part of a small, private, *INFORMAL* study by Debbie Norman with a machine called the IonCleanse by AMD.  (Click HERE to see the results of the study.)  Debbie asked ME to be part of this study.  The Lord led her to ask me, I just know it.  Well, I DO know, because I had the chance to meet her and ask her why!  Jacob said, "So we're going to meet the lady who gave you the keys to the lock to open the door to the rest of your life?"  Sigh.  I LOVE that boy. 

I thank God every single day for this machine that has transformed my life.  My miracle.  I cannot thank Debbie enough for listening to God's whispers when it came time to find participants for the study. God is GOOD.

So what is the IonCleanse by AMD you ask?  Well, it is an ionic footbath. Mmmm-hm.  That's what I said.  A foot bath.  You put your feet in a tub filled with good ol' tap water, put something called an array in the tub, connect it to the computer (machine) and plug it in. YES, we're talking water and electricity here.  That is why I can ONLY recommend the IonCleanse by AMD.  It has a 100% safety record, and it has been tested, and tested, and tested.  You can buy a knock off made in China for a LOT less money, but there is NO oversight, NO testing, NO safety record, and it's basically a glorified battery charger.

I. have. gotten. my. life. back.

Did you get that?? I got my life back! What dollar amount do you put on getting your life back??? I would have paid 10 times the amount!! I can drive to an appointment an hour away, with Jacob, go to the appointment, drive an hour home, and still be okay. For many of my 20 years with Myasthenia Gravis I could not drive at all.

I can walk on the treadmill for 10 minutes and not get out of breath.  I used to get out of breath going to the bathroom.

I can do laundry.  (Aren't you excited for me?!?)  I can vacuum.  The whole house. I can take off and put on sheets on my queen size bed.  BY MYSELF!!!! These may be trivial, monotonous chores for most folks, but if you couldn't do any of that for over 15 years???  Not even put one load of clothing in the washer?  You would understand what a big deal this is for me.

Last summer, for the *first* time since my son was born over 11 years ago, I looked at him and asked him where he wanted to go to do something just for fun.  I had NEVER been able to do that before in HIS entire life. My eyes tear up just writing this.  I've always wanted to be a mom...Always.  And I struggled raising him.  I struggled every. day. of. his. life.  

Until the IonCleanse.  HERE is the link where you can find out more information. I'll tell you right upfront it's expensive.  It's about $2000.  They have a 60 day, 100% money back guarantee if you're not absolutely enamored with this machine.  I noticed after about 6 weeks (well within the 60 day guarantee) how much better my depression was!  I had a teeny tiny hope that the IonCleanse would help with that, but I was resigned to having horrible depression my whole life. That's a whole separate post, and I WILL post more about this, but I don't want this to become a book. (Not right now anyway 😏 )

There is also a payment program that you can sign up for when you call IonCleanse by AMD.... It's kind of like rent-to-own. The people at AMD are amazingly helpful, and they all speak English!! AMD (A Major Difference) is an American company.  Just one MORE reason they are awesome! It's not like you call and get "Bob" from Pakistan to help you.  You may even talk to the President of the company!

Anyway.  I just wanted to share my amazing, happy news, that I have been able to go an entire year without the traumatic experience of getting all of my blood sucked out and put back in my body.  I am prayerfully hopeful that I will never need it again.

Thanks for reading and sharing in my joy. God is GOOD!

MG Strikes Again

Hey everyone.  My goodness, MG has been kickin' my BUTT this week.  Just not feeling my "normal."  Which is pretty darn arbitrary, actually. LOL. I mean, my "normal" hasn't had any rhyme or reason well, pretty much my whole life!  I've always been the star shaped peg trying to jam my way into the wrong slot.

Sometimes I think I still feel that way.

That's one thing about chronic illness that is really hard for other people to understand, unless you have walked a mile in my slippers, ya know?  Inside, nothing has changed, except I struggle a bit more with depression than I used to.  Not a ton, but some.  How could I not?

But like, I still want to do and be everything I wanted to do and be 20 years ago.  It's just that now I have this body that holds me prisoner, preventing me from doing those things. 

I still want to go out and have fun!  I used to be a FUN person!  I used to be the life of the party.  Now there's no parties to be the life of!  And that really bums me out. 

Lots of people say it's because of where I live.  But it's really not, because I'm talking about MY ability to leave.  It doesn't matter WHERE I am; if I don't have the strength to get dressed, I'm not going anywhere.

I want to go out for coffee with a friend.

I want to go to movies and not have to worry about who in the crowd MAY have a cold, knowing that the ONE person who MAY be ill will indubitably sit immediately behind me and hack on me all movie long.

I want to take my son to museums and children's parks and all the places that are nasty, germ-filled, over populated, and understaffed just like every other kid gets to.  I want him to go to bouncy houses and Chuck E. Cheese and movies and shopping malls and play in the play areas where there are 300 other children.  (Okay, maybe not Chuck E. Cheese.)

I want to be able to let him explore the world like any other "normal" kid.  But I can't. 

It seems like as the years go on, my lungs get worse, especially in the winter.  Every time I get sick lately I either get pneumonia or cough up buckets of blood.  So I feel like I have to rob my child of all those fun things.  And it's the crappiest feeling in the world.

On the outside, if you see me out (I HAVE been known to leave the premesis), I look good.  Because I have my hair done, make up on, and I slap a smile on my face.  But only I know what's really going on inside.

It's just tough, sometimes, to have people wonder why you can't just "buck up."  Believe me, I want to. My head wants to, my heart wants to, but this %!#%^ body just won't cooperate. And it get really old trying to explain.

So I ask you all to just bear with me, and in the words of a dear, sweet, MG friend, let me "walk with [you], awhile and hold [your] hands so [you] can guide [me] through the tears."

Pouring My Heart Out

So I have seen this before, but never really knew how to participate or how to link up, and it seemed I was always on the wrong day...well, I'm up early, it's {dare I say it} quiet, and so I actually got to poke around a little bit, and viola...here I am on the right day and everything.  Miracles never cease.

Then I'm thinking, well, I probably do this all the time...pour my heart out.  There really isn't anything I don't share on my blog.  I'm pretty much an open book.  But sometimes there are things I don't talk about, because of who might read them, or who I might offend, or who I might freak out, (mom) but today, I'm throwing caution to the wind.

Today, it's about depression.  Now everyone in my family knows that I struggle with depression, because half of them do too.  Mental illness runs in my family.  Yes I said mental illness.  Because that's what depression is: it's mental, not physical (although it affects you physically as well), and it's an illness.  It's not a mood, it's not a choice, it's not something that will "go away if you try hard enough."

It's a horrible, life-stealing, spirit-sucking, all-encompassing agony that people who DON'T suffer with it will never understand.  People who suffer from depression CAN have great days, yes.  They CAN be happy.  But when I am in the midst of a depressive episode, I can't just "snap out of it."  I can't just "cheer up."  I can't just "grin and bear it" as much as I wish I could.  As much as I will myself to just blow it off....I cannot.

My depression has been really bad lately, for many reasons.  Obviously, having a wonderful, normal, productive life and having it ripped away by a debilitating chronic illness doesn't help.  And it's been so hot that even though I may feel okay MG-wise in the house, I can't step outside because of the bizarre, record breaking heat wave.  I'm a prisoner in my own home, even when I'm not a prisoner in my own body. Talk about double whammy. 

And then there's just the stress of being chronically ill and all the BS that comes along with it.

Depression makes me want to just stop.  All my medication, all my treatments.   It makes me want to stop living, stop breathing, stop fighting so. damn. hard. for every minute.  Joyce Meyer has a book called "Battlefield of the Mind."  And that's exactly what it is: a battle.  And it's not an easy one.

Think about it:  do you know how much EASIER it would be for me to just swallow every pill in my house and call it a day? A life?  To NOT have to deal with MG and a trach and depression and pain and fibromyalgia and doctors and medications and prescriptions and fighting insurance companies for equipment I don't want to need and procedures I don't want to have?  Seriously.  Do you have ANY idea what it takes for me to make it through ONE DAY in my life???  There are days when it's all too much.

It is SO much harder to FIGHT than to just give up.

So why am I here?  Honestly, sometimes I don't know. But I know Who does.  God has obviously spared my life, because medically, scientifically, in the physical realm of life, I should not exist.  My body has gone through such turmoil and trauma that it physically should not have survived.  So how can I throw that away?

I cannot.

I am, at the core of my being, an optimist.  I love to love more than I hate to hurt.  I don't have the "give-up" gene.  It's not in my DNA.  And God knew I would need that when I was knit in my mother's womb.

Most of all, I have Hope.  I KNOW that when this life is over, I will be forever made perfect.  Physically, mentally, spiritually.  It will be as if a thick, hardened shell will be broken, and the REAL me will be allowed to come out and live eternally in physical and emotional perfection.

And no matter how long I am on this earth, compared to forever it's a drop in the bucket.  So when I am really, really down, I look into the eyes of my miracle child.

I think of the friends I have BECAUSE of this hideous illness called MG.

I think of the husband who stayed after finding out his wife might die, and finding out his wife would never be the person they both thought she would be, after only six weeks of marriage.

And I think of my God.  My Hope.  My Salvation.  My Rock.
I KNOW my Redeemer lives.

Do you?

My MG Pregnancy-Part Two

Okay....so we left off at the fertility clinic, in the room, getting the ultrasound, searching for the number of eggs able to be retrieved for in vitro. To give you a hint, my friend had this done and she produced at least 30 each time.

And they found.........one. One. Uno. Eins. Een. Jeden. Un.

Yah. I was devastated. And I was alone. I left in a state of shock. We were just SO sure this was going to work. I didn't respond to the fertility drugs. Apparently I couldn't have a baby. I went home and took the few baby things I had gotten (an adorable giraffe that said the "Now I Lay Me" prayer, and a little baby toy someone had given us when we told them what we were doing). I gave them to Doug and told him to burn them. (He didn't, but he got them out of my sight).

It was almost a year of getting over the disappointment, trying to figure out what was next....I really didn't know how important it was to Doug to have his own biological child. To me, any child would be mine if I raised it and loved it. I never had a strong desire to HAVE children...I just wanted them. Lots of them. Having this infernal disease was going to make that very difficult.

In May of 2005, after seeking God and lots of prayers on my part, on my friends' parts, my family, etc., I very clearly heard God tell me to "submit to my husband" in the area of the baby. I was like a child dragging their feet..."Fine," I thought.

I told Doug we could try "the old fashioned way" but I would only try for one year, and then we would adopt. I had it so stuck in my mind that I couldn't get pregnant...but there I go again, playing God when I should know better!

We had to start with my neurologist, who gave us the okay after four months of being off my CellCept. I had to go off my anti-depressants (which I very soon had to go on a pregnancy safe one because I was losing my mind). I had to go on a blood pressure medication, start seeing a perinatologist (high risk OB people), and had to go on insulin. The insulin made me gain 20 pounds before I we even started trying, so I was not very happy.

Speaking of high risk, I had all these factors: obviously the MG, I was diabetic, I was 35....three BIG factors in a high risk pregnancy.

Both of my sisters gained like 100 pounds with their pregnancies, and I'm thinking, "I can't even move (I really went downhill off the CellCept)...I'm going to gain 150 pounds." I was nervous, to say the least.

We started trying in October of 2005. I took a test in October, which I shouldn't have, because it was negative, and I was really surprised at how disappointed I was. I still didn't really WANT to be pregnant. I was terrified! And my family thought I was crazy...they were very concerned about my health. In November I got my period before I even thought about testing, so I knew then that I wasn't pregnant.

On December 10, we had a Michigan MG meeting in Dundee, Michigan. Well, in Dundee there is a Cabela's. I love Cabela's. What I didn't know what that it was like Cabela Club Member Day and there were about 420,000 peeople in the store. We didn't even want to walk around, and the lines were to the back of the store. It's a BIIIIIG store... We only needed a few things, so I got in line right away, and Doug went to get the stuff. It didn't help that I was having THE worst case of PMS EVER, and I was ready to kill everyone I looked at. I hate crowds ordinarily, but this was a special kind of hatred. I was supposed to get my period that day, so I was just waiting. I KNEW I couldn't be pregnant because of the PMS from hell.

Well. We got home about 9:30PM, and still no period. I was going to test in the morning, Sunday. I couldn't wait. I just wanted to get it overwith so I didn't wonder all night long. I would cry a little, then go to bed. So I got the test out, peed, and put the stick on the counter.

To my shock, amazement, and utter glee (which I wasn't expecting) a big ol' PLUS sign showed up. I just sat there for a minute. I was actually speechless. For those of you who know me well, that NEVER happens. I brought the stick into the living room where Doug was watching TV. I gave him the stick, and he just looked at it.

He said, "What does this mean?"

And with great delight I replied, "What do you think it means.....Daddy???"

To be continued.....