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!

Can Anyone Tell Me What's Wrong?

We last saw our heroine as she was intubated and flown via helicopter to the U of M, half dead.  If you missed that post, you can check it out here: http://sickofmg.blogspot.com/2017/06/ah-june.html

Now, the best thing about the University of Michigan hospital is that they are a teaching hospital.  That means you get the opinions and minds of MANY doctors and medical students pitching in on your case.

The WORST thing about the U of M hospital is that they are a teaching hospital.  That means they switch doctors every calendar month.  When I first got to the hospital, I had *rock star* doctors (or so I'm told... I was heavily sedated for my own safety, and probably the safety of the medical staff around me!). I received 2 rounds of plasmapheresis, so a total of 10 treatments in October.

November hit, and I got new docs.  And they sucked.  They were lazy, narrow-minded, uneducated people who didn't give a rat's ass about their patients, and gave even less thought to solving the patient's problem.  Dr. Andrea Bozoki and Dr. Ming Hong...These are two names you should remember if you ever need a neurologist.  Run far away.  Why? Because they almost killed me.

They stopped doing the pheresis treatments which were definitely helping me and giving me strength back.  They decided I didn't really need it.  They came up with this crackpot diagnosis of "chronic axonal motor neuropathy."  So let's break that down....

Chronic:  Always
Axonal:  adjective form of axon, meaning nerve fiber
Motor: movement
Neuropathy: refers to general diseases or malfunctions of the nerves.

So their diagnoses was something like I always had nerve fibers that malfunctioned when I moved.

{{crickets}}

Dr. Bozoki told my family if I lost 50 pounds I would be fine.  FINE. Not fine!
Dr. Hong told me (while I'm in the hospital, on a vent, trached to get rid of my double MRSA pneumonia) that if I would just accept the fact that all of this was in my head I would get better.

I looked at him, grabbed my notepad and wrote, "You mean I'm CRAZY?"  And he just kind of closed his eyes and nodded his head.   Yes, these were the doctors in charge of my health, my very LIFE...and they thought I was an overweight nutjob.  Instills lots of confidence...

I was discharged just before Thanksgiving with pain pills and quite a high dose of anxiety medication.  Nine days later, (praise God it was December and I'd hopefully not get any WORSE docs than I had in November) I was driven back to the U of M ER when the pills I was trying to swallow were coming back out of my trach.  By the time I got to the hospital, I had almost no muscle control.  By the time I got to a room, at 2 A.M. (after sitting in the ER for 10 hours), my entire face was paralyzed.  I couldn't close my mouth all the way, and I couldn't open it.  I couldn't open one eye and I couldn't close the other.  I couldn't hold my head up.

And I was terrified.  

To be continued....

Baseball and Pheresis

That's my boy!

Now those are two things you always think of together, aren't they?

Yah.  Jacob had baseball practice last night...they all had to be in full uniform because they were getting team pictures done too (and of course individual if you wanted it....so I of COURSE got the key chain, the 5x7 (and one for you mom), the button, the team photo....)  Jacob is just SO stinking cute out there!  Half the time it's like the Bad News Bears.  But so precious.  (Except for Chuckie... see yesterday's post...)

But the kids are just darling.  There are a couple who are pretty good!  They can throw well... Jacob bats really well...and he's a lefty, so he's a good asset.  But of course I'm his mother, so I'm going to say that!

Tomorrow is pheresis.  I just start to feel better from the Hideous Illness that befell our family towards the end of MARCH...now, I get to go tomorrow to get all my blood sucked out and feel like crap so I can feel better again.  YAY ME!!

Or not.

Plus, Jacob is going to miss his last practice on Friday because I have an appointment in Grand Rapids, plus pheresis, so we'll never be back to Allegan by 6.  And his first game is Monday already!  They've only had a handful of practices because it's been so rainy....  But it will be fun.

They have a really great coach...Jacob loves to help him.  Got to talk to him a little bit about MG, as he asked what treatments I was receiving. (I told him Jacob wouldn't be there Friday because I'd be in the hospital in Grand Rapids.) He asked really intelligent questions, and it was cool to have just a casual but informative discussion about MG.  Spread the word!!

So I should be fine for Monday's game...Doug can push me in a wheelchair if not. I wouldn't miss it for the world!

Plasmapheresis

This is a plasmapheresis machine.  Yes, I'm sure that's the technical name for it.  I've had lots of questions lately about what plasmapheresis is, and how it's done.  This is actually one of the older machines (that I prefer).  They have a newer machine that's supposed to be more effective.  Not sure how that could be since it does the very same thing.

So.  Here's the procedure:
 
I have to go to the hospital for treatments every 4-6 weeks.  (Hope this doesn’t gross you out)…they use big ol’ needles, one in each arm.  One arm is the “draw” arm, where the machine takes the blood out.  Then it runs through the machine, and the machine spins out the plasma in the blood. The machine spins the plasma out of MY blood, and puts something called albumin in my blood.  This is a liquid made up of several hundreds of donors who have donated plasma like to the Red Cross or at a blood drive or whatever.  Then that blood, with the new albumin in it, goes back into my body through the needle in my other arm.  It takes about 1 ½ hours hooked up to the machine, and I feel pretty lousy the rest of that day and the following day, then I feel better.  I should have at least two treatments at a time (with one day in between treatments).

I am BLESSED to be able to use my arm veins. I've been using them for 11 years.  That's a miracle, really.  Most people who get plasmapheresis have to have a catheter put in every time they have a series of treatments, and many of those have to STAY in the hospital.

I used to go to Ann Arbor once every 3 weeks for only one treatment, and it wasn't doing any good.  Kept me alive, I guess that's good...but I wasn't improving. If anything I was getting worse.  The stress of the drive both ways took away any benefit I was receiving from the actual treatment.  Now, because of a wonderful reunion with an old friend (thanks to facebook), I go to a local hospital, and can get a treatment done in one afternoon.  

My new/old friend used to live next door to me when I was little.  She also worked at St. Mary's hospital and KNEW that they did plasmapheresis because she worked in the unit where it was done, and told me who to call and everything.  What a direct blessing from God!!

So anyway.  That's pheresis.  If you have any questions, I'd LOVE for you to ask away!  

Oh, one final thing.  If you ARE able to donate plasma, PLEASE do it at the Red Cross or another reputable blood donation center.  The places where you can go to get paid to donate plasma are independent businesses who profit from that plasma.  It is NOT used for people like me who need it to live.  It's sold overseas for exorbitant amounts of money, and is used in things like cosmetics.  No lie.  So PLEASE investigate and be aware of where you donate.

For those of you who DO donate, THANK YOU!!  I'm literally alive because of YOU.  

My Medical Week

Okay, so I have NO excuse for not posting Tuesday.  But Wednesday we left the house at 9:20 to go drop our van off for service, then it was lunch and to the hospital for plasmapheresis.

Jacob had to go with us because he seemed to have had a little cold, and I wasn't taking ANY chances with my dad's health (or my mom's...) and I have to tell you.  He was PERFECT.  All the nurses loved him, and he was just amazing.  He sat so nice and drew like 6 or 7 pictures for the "girls" (nurses).

He was polite and used good grammar and good manners and made me the proudest Momma I could ever be!  It was everything you prayed for and nothing you imagined! LOL  Seriously....my child is BUSY.  And he is LOUD.  And I love him for that.  So, I imagined that he would be tearing up and down the halls of the short stay unit terrorizing patients who had just gone under the knife.

But no.  My angelic, rosy cheeked child sat and colored, and drew, and made several trips around the corner to visit the aquarium in the surgical waiting area. :)  He was SO perfect.

Pheresis was okay on Wednesday but SLOW.  I only ran 80, so it took OVER 2 hours.  UG.

Thursday was spent recuperating, and Friday was another long day.  Only THIS time, my friend Shawn's son Rick was available to watch Jacob.  YAY!!!  I knew I couldn't expect him to be SO good again all day long.  This time we still left about 9:20, but first I had a pulmonology appointment, and THEN pheresis.  (Got all the way up to 95 on Friday's treatment! Woo-Hoo!!)

Yesterday was another day of recuperating.  Today I'm doing pretty well, especially since Doug let me sleep in. (Love you honey!)  OH, wait...he doesn't read my blog.  Oh well.

SO.  Back to pulmonology.  I have the best doctor.  If you live locally, and you ever need a pulmonologist, see Dr. David Shen at St. Mary's.  He's awesome.  He's super knowledgeable, but he also takes the time to REALLY listen to YOU, the patient.  He trusts that I know me better than he knows me, and I appreciate that SO much.  He's also very thoughtful...like he really thinks about every angle of what we can do to solve a particular problem.

In this case, it's the problem of the coughing-up-of-blood-from-the-lungs.  I had taken pictures of my suction machine (don't worry, I won't post them) with the amount of blood I had been coughing up as well as the time frame in which said coughing occurred.  He was....impressed.  Not in a good way.  Although he thought it was good I took the pictures. Go me!

So here's our plan:  I have a CT scan on Friday to rule out any "big" problems...masses, etc.  This is NOT a likely reason that this is happening, but I had a CT a year ago kind of for the same thing, so this will be a good indicator if the health of my lungs has changed drastically in the last year.  I would say it has not.

Then, he gave me 3 sputum (SUCH a gross word if you ask me) culture bottles, so that IF I start coughing up copious amounts of the red stuff again, I can hack into the cup and bring it to the hospital with the order he wrote to test for bugs (the germy kind, not the 6-legged kind).  I have 3 bottles so that I can do this 3 days in a row, and they'll test all 3 samples.

PLUS he gave me a prescription for Cipro, the ONLY antibiotic I know I can take, to have on hand in case I get really sick on a weekend, or say, if we are out of town or whatever and get really sick (lung-wise) I know I can get this filled and not worry.

So I would say our bases are covered.  He is awesome, is he not??

I was SO devastated when Dr. Lovy left.  And don't get me wrong...he is missed.  But if anyone had to replace him, I sure am glad it was Dr. Shen. :)  God is good!

My Story

I have been dealing with this disease called MG for about 17 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. 

MG is a disease to which you are "genetically predisposed."  What the heck, right?  It's NOT hereditary (unless it's congenital MG, which is a whole different ballgame).  I liken it to having electricity in your house... The potential for light is there, but you need to flip the switch.  IF you never flip the switch, no light.  Same with MG:  MY "switch" was getting my tonsils out.  All those antibodies that had been fighting my tonsils had nowhere to go.  So they attacked me.

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. More than one told me it was all in my head (that I was crazy).

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. No one knew if 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 intercostals 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 6 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 born with transient (temporary) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5 weeks. 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 get plasmapheresis 3 times in a week every 6-8 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.

Trying To Focus On The Blessings

This morning has been a very melancholy one for me.  It's getting warm out.  The time of year when most people go outside, go to the beach, go swimming, have picnics outside, enjoy the warm weather...

But I can't do that.

Summer is usually a very lonely time for me.  I have been trying to focus on the positives in my life, but today it's been hard.  I know I have it so much better than so many, even with my health issues.  I have a beautiful home with a husband and son who adore me.  I have 3 fluffy dogs that drive me insane love me a lot too!  I really do love my doggies...sometimes they just get loud.

June is National Myasthenia Gravis Awareness Month, and so I'm posting each day about MG and its lovely effects on my (and others') life.  It's exhausting to always FORCE yourself to focus on the good when it's so much easier to focus on the crud and complain.  I try not to whine and complain, but hey, we all have our moments. Sometimes the grief of what I have lost to this disease consumes me.  But then I look Up, and remember that I have a Hope and a Future waiting for me in Heaven, and that this life is fleeting compared to eternity.

AND I'm getting my first 10 "Chronic Illness Packets" out.  Gotta get working on my book again too.  I made HUGE progress last November with NaNoWriMo.  Not much since then.  I need to get a new computer (working on that!), but that's no excuse.  Gotta get on it.

I'm a little in a funk from pheresis too.  Had 2 treatments last week, and have one more this Wednesday.  Then I will be done for a loooong time.  I'm hoping to go all summer.  We shall see!

Until tomorrow....remember, just because someone LOOKS fine doesn't mean they ARE.

Did Anyone Get the Number of That Bus?

Okay.  Had my first pheresis yesterday in 2 months.  First, let's get a big hoo-rah for making it 2 months!!!  AND I WALKED all the way to the out-patient department from the parking ramp.  I have NEVER. BEEN. ABLE. TO. DO. THAT.  Whoo!

But this morning....oh my word.  I can't type straight, I can't read straight, I can't hardly function.   And Jacob is MORE than full of it today.  Oh the joy of chronic illness.

Be prepared, tomorrow stats June, and National Myasthenia Gravis Awareness Month!
That's all I can manage for now. Love to you all!
Kerri

Plasmapheresis

Had a treatment yesterday.  Feel crappy today.  Have another treatment tomorrow.  Hopefully will feel better by the weekend.  Then not going back til January!!  Woot Woot!

Updates and Prayers

IMPORTANT....PLEASE DO NOT COMMENT ABOUT MY DAD ON FACEBOOK...COMMENT ON HERE IF YOU WISH.
THANKS. 

Okay.  First of all, I don't know if I'm gonna get in trouble for sharing this or not.  Technically, I'm not sharing on facebook, so...anyway.  My dad is a VERY private person.  He is 72, and in that generation, you keep your problems to yourself, it's nobody's business, we don't talk about things like this, blah, blah, blah.  Well tough.

My dad is also a Christian.  They have told their closest friends...I have asked a few people to pray via e-mail and such, but I want as many people praying for my Daddy as possible, so I'm making it known.  My dad was just diagnosed with cancer.  Adenocarcinoma to be exact.  Right now all we know is that he has one "small" tumor in his right lung.  He had a PET scan last Saturday, and an MRI on Monday which will determine if the cancer is anywhere else, and what stage he is.  So I am asking you to please pray that this cancer is only in the one spot, and that it can be treated and cured without surgery.  My dad is not in the best of health anyway.  Ironically, he quit smoking about 3 months ago after 60+ years.

Also, if you know my parents, please do not say anything to them at this time.  His name is Harold.

Obviously this is horrible news, and it's stressing me out.  I'm not ready to lose my dad.  I know no one ever is, but Jacob is only 5 and he needs his Papa.

Stress is not good for my MG.  Nor is this wicked cold that will not leave me alone.  So that's my second request, that you please pray for me to get rid of this blasted thing.  It's really starting to take its toll.

Jacob is mostly better...still coughing a bit and runny nose on and off.  Doug hasn't gotten the head cold, but he has been achy and just generally feeling kind of under the weather for the last week or so as well.

Finally, I am scheduled to have a port put in Wednesday the 28th.  I MUST be over this cold, and I want everything to go well.  I have toughed out a lot of bad treatments with the plasmapheresis, but this last one was just too much.  I have never wanted a port.  The risk of infection, of it clotting, not working, having to be replaced too soon, etc.  But my veins are revolting, so after 11 years, I think it's time. I would very much appreciate your prayers for that as well.

So thanks everyone....as you can tell I kind of have a lot on my plate right now, and knowing you all are praying helps me SO much.
Thanks.

Two Down, One To Go

Well, thankfully yesterday I got a full treatment in.  I had Nervous Nellie, but she wasn't as nervous as before.  Not quite.  The BEST thing was that she got the needles in right away, one poke apiece, and that I got the whole treatment.  The WORST thing is that I was there for over 3 hours.  Good Lord the woman ran me slow.  The longer it takes the worse I feel.  I don't know why.  Just like I can't figure out why the "new" centrifuge machines that are supposed to be more efficient and actually take out more of my plasma percentage wise, make me feel worse instead of better.

Then I get word that they are getting ALL new machines, and getting rid of the old ones.  Doug was immediately like: what are they gonna do with the old ones?  I could see his wheels turning.

Seriously, though...how cool would it be to have my very own pheresis machine, and get a nurse to come here and do it in my own home?  One can dream....

Anyway....I'm pretty wiped out.  DRAINED you might say (ar ar, pheresis humor).  The bruise on my arm from Wednesday is pretty nasty, and my whole arm still aches.  But alas, comes with the territory.  This pic is from today, 3 days later.

So that's it for now....rest today and tomorrow, and then Monday is the last treatment til the middle to end of October. Yay for that.

Plasmapheresis

It's that time again...Plasmapheresis 3 times in 6 days.  Only problem is yesterday was the first one, and they blew a vein.  I only have 2 veins in the arm that blew the one, so if they can't stick the other one, I'm hosed.  My OTHER arm only has ONE good vein for pheresis...so...

It's weird, the treatment was going great...the sticks didn't hurt when they went in, then all of the sudden, when there were only 1 1/2 bottles left, I started getting this excruciating pain in my right arm (the return arm).  Somehow either the vein blew, or the needle dislodged itself somehow, because the return (my blood with the untainted albumin, or plasma) arm was not getting fluid pushed into the tissue instead of the vein.

Let's just say that there is NOT supposed to be fluid being pushed into tissue.  Kind of like trying to add a liter of fluid to an enclosed watermelon.  Hurts like a mother.  The WORST part is that yesterday was treatment number ONE.  Ugh.  NOT looking forward to tomorrow.  So far the bruise is about the size of a golf ball, and it's getting bigger.   It's starting to really ache as well.  Lovely.

My computer has been acting up since Sunday, so that's why I haven't posted as much as usual.  I had to go back to the oldest version of my data card and it was super slow and didn't work have the time.  I had a gazillion viruses on this thing, then today I find out someone from Luxembourg of all fricken places hacked into my email via skype the ONE time I tried to use it.

I mean seriously people?  Let's hack into a chronically ill person's computer and screw with the one social avenue they have.  Jackwagons.

Recovering

Hey everyone. I am recovering from my treatments. We did them on Wednesday, Friday, and the third one on Monday, and it seems to be better that way. I'm not as bad after three this time as I was last time. That one extra day in between really helps. Now if we can just get everyone's schedules together, we will be golden!

I posted a video on facebook and youtube...I forgot to make it go on my blog (I'm so tech-savvy, aren't I???) but here is the link if you want to check it out.

I think this is it: http://www.youtube.com/watch?v=eqH7rEiplnY&feature=feedfbc

Yikes

Quick post.....Would really appreciate your prayers. Have my third treatment today, then a doc. appt. It's getting ready to storm REALLY bad...the lakeshore) 20 miles from here) has had up to 85 mph wind gusts. I do NOT want to drive through this. Please pray for our safety and for a good treatment.
Thanks.

Health Update

Two treatments down, one to go. Had another newbie to break in yesterday, but she did pretty good. One needle needed adjusting, which is a pretty intense, special kind of pain. The worst part was the waiting. We actually got there early, because we left early to run a couple of errands (well, Doug ran, I schlumped) and met my sister Lori who took Jacob back to her house. (Which he LOVED!)

So WE get there early, and the tech is running LATE, because the guy she ran at a different hospital wanted to run really slowly. I'm exactly the opposite...I'm like "The faster the better.... up til like 110 anyway." She was super shocked, but it went well overall.

But as I said the worst part was the waiting. Once they get there, they have to go get the pheresis machine, run all the tubing, etc....so while we got there at about 12:45, I wasn't hooked up and running until 2:10. I told Doug it's like waiting to be tortured. (Not that it's TRULY torturous...) But I hate it. You think I'd get used to it, but I never do. Doug's like, "You'll be fine." And I know I will be, but putting yourself through something you DREAD (root canal anyone?) and then having to wait an hour and a half before time.....Ug. Torture.

Every single nurse has asked if this is the last treatment then, and I'm like, um, no. They're like, well how long to you have to get this done? I'm like, forever, until there's a cure or I'm healed by God. Welcome to the reality of chronic illness. {Speaking of a cure, YOU can help by purchasing something from my new business, Kerri's Kreations, and 10% of all proceeds will go to the Great Lakes Chapter of the MGFA}.

Anyway. I'm feeling pretty wiped out, but NOT as bad as I was after last time....today is the day after treatment number 2, but I don't have the 3rd one til Monday, so I'm hoping having one extra day in between will help me not be SO run down after number 3. We shall see.

Blah

Completely wiped out from three plasmapheresis treatments today. No energy. But I know it will get better. Hopefully tomorrow I'll have a decent post for you all.

Plasmapheresis Number Two Today

So today is the 2nd of 3 plasmapheresis treatments at St. Mary's. The only bummer is that I may or may not get the same ladies from the Michigan Blood Program. And I adored the ones I had. When I saw the first woman, Judy, I lifted my eyes heavenward in silent thanks. She had gray hair. I thought...she has EXPERIENCE!!! I told her that and she chuckled...but it was true!

I'm expecting even better things today, because the nurses at short stay have seen me once already, and know more about how things go with ME personally. Very cool. I have to say, I am SUPER impressed with St. Mary's as far as how GENUINELY kind and concerned the people are. Even the girl who called yesterday to do pre-registration was SO nice! Most of the time, or a lot of the time anyway, people who have that job are pretty uninterested, even borderline rude! So I'm just thrilled that things are going so well. I expect the same thing today!

Karen came over yesterday with Emma (Kerry had a field trip with her middle son) and we had such a wonderful visit. I thank God for those women. They are not only portraying the heart of Jesus, they are becoming such dear FRIENDS!! Love you girls.

So. Please keep my treatment in your prayers today. Also, my sister Lori is still healing from her gallbladder surgery, and they are having a garage sale to raise money to pay bills. If any of you would like to pray for them, and finally, Karen's darling little girl is having surgery on Friday to get her tonsils out and tubes in her ears. So please keep Julianna in your prayers.

Thank you for reading...for commenting....for supporting....for praying. It truly makes a difference.

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!

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!!

Yes, I'm Still Alive!

What a week! My friend Tina and her adorable kids are leaving tomorrow...I can't believe it's been a week already! Jacob will be lost without his playmates. How wonderful though, to have Jacob occupied all week, be able to rest whenever I needed to, and have a girlfriend to talk to as well. Awesome.

There are some wonderful things going on and some not so wonderful, but the wonderful are starting to outweigh the rest. I can't go into too much detail, but I would ask that you would pray for guidance for me and the folks at Love INC who are so amazing in their outreach...that God would bring the right people together to fulfill His will and His desire for the sick and imprisoned, the hungry and naked, the stranger and the widow all be attended to.

Love INC is nation-wide...I would love for you to check out this ministry! Click here to find out more.

On another front, there is a fantastic organization locally that is offering 2 hours every other week to come and clean my house. I am so thankful. I finally got hooked up with the right people, and though I see some doors clearly shutting, I see so many others opening up.

I am continuing to improve in health, Praise God. My vitamin D level is no longer considered "deficient" so THAT has helped my energy level as well. Between that, the breathing machine during the day, the rest I've been able to get this week and medication changes...I think we may be one to something! Today would have been my week for plasmapheresis, and I don't feel like I need it at all!! That is HUGE.

I will be back more regularly from now on...I just was so stinkin' busy this week! Looking forward to sharing more as I get details of some really cool opportunities.
Have a great weekend!