Monday, February 28, 2011

Last Year At This Time

So I read Mama Kat's writing prompts this week, and one is perfect for what I'm feeling. The question is: What were you blogging about last year at this time? What has changed?

Well, last year on this very day I wrote about being almost home from our vacation from the pit of hell (to Florida.) A month long, truck driving, boat towing, freezing our butts off, dealing with a 3 year old on his first vacation, ghetto staying vacation from hell.

What has changed? What hasn't. My health is in the toilet. Jacob is more of a handful. I feel more and more like a failure as a wife and mother because of my health. I am holding it together, white-knuckling it every day, trying to decide which horrible treatment I'm going to choose for my MG (I've decided on Rituximab), praying I don't get the 90% fatal PML as a complication from said treatment. It's really a very UN-likely possibility, but just the fact that it's a possibility sucks.

Sometimes, well, MOST of the time to be completely honest, my life is totally overwhelming. How can I take care of my son when I can't take care of myself? How can I train him in righteousness when I don't have the energy to feed him? How can I be consistent in discipline when I can't remember the last 2 hours? How can I stay sane when I can't leave the house? How can I get my husband to understand what a big deal simply living every single stupid day is? Let alone worrying about bills and budgets and insurance and co-pays and prescriptions...I have like 21 medications. I have to keep that all straight. Not to mention more personal care-taking issues that are difficult for me...showering, shaving my legs, etc.

Then I read on facebook that Jeremy Camp wrote, "A fool vents all his feelings, but a wise man holds them back." Proverbs 29:11 NKJV

I guess it just put me over the edge. Holding it in would kill me. Literally. So I guess the Lord is just going to have to understand that I've having a tough time and need to vent. If that makes me a fool, then it makes me a fool. I've been called worse.

Saturday, February 26, 2011

Decisions, Decisions.

So I'm researching treatments for refractory MuSK+ MG. Let me tell ya, there aren't a lot of options. The two most viable at this time seem to be Cytoxan and Rituximab. Both are chemotherapy drugs.

The Cytoxan has fewer side effects but they seem to be more prevalent. I would probably lose my hair, and could get bladder cancer.

The scariest thing about Rituximab is this horrible disease called PML which has a 90% fatality rate. I don't think it's a COMMON side effect, but it's a possibility.

So if ya'll want to say some prayers for wisdom, I sure would appreciate it.

Friday, February 25, 2011

MuSK+ MG

Well I learned a new word in conjunction with my MG today, and it could NOT be more fitting. I'm looking up Rituximab, which seems to be the logical next step for me in my MG treatment. It says that Rituximab (Rituxin) is used on refractory MG. So you should know by now, I'm looking up refractory in my Synonym Finder (the second best book every written, after the Bible)!

Here are my favorites: stubborn, uncontrollable, obstinate, bullheaded, willful, and headstrong.

Now, those of you who have known me for a while are probably peeing in your pants. If anyone in the world would have stubborn MG, it would be me. The irony is NOT lost.

Therefore, I have decided to apply my obstinance to finding the best treatment for me. I've read of 2 cases so far where MuSK+ MG has gone into complete remission using Rituximab. I'm also asking anyone I know who either has MuSK+ MG, or knows someone who might, what their treatments are, what works for them, what doesn't, etc.

Many that I've read about had been doing pheresis. However, whereas I was going every 3 weeks, these folks were going three TIMES a week. I cannot imagine that. Of course they would have ports, or fistulas, or some kind of veinous catheter, not use use their own veins every time like I had been.

It's quite irritating that so many articles are blocked unless you're a doctor, or belong to some medical association. Patients want information too for crying out loud!

So I will put my plea here as well: If you, or anyone you know, has MuSK+ MG, please leave a comment here, or contact me through my blog and I will get back to you. I would love to know what's working for you, if any of you have tried Rituximab (Rituxan), and if it worked. Thanks!

Thursday, February 24, 2011

Sigh

So I'm stopping the cyclosporine. YAY! Then my neuro. says there's a drug I can try before we start the chemo one (IF my insurance will pay for it). YAY again! So I look up the drug, and I can't take it because I'm allergic to macrolides (azithromycin) and it says if you are allergic to those, don't take it. BOO!

My brain is mush. I'm frustrated. My doc is frustrated. My hubby is frustrated. But thankfully, the Lord is not. I had this on my bulletin board, and I'm not sure if I shared it before or not, but I need it right now, FOR SURE.


Strength for the Journey by Theodore Epp

From Strength for the Journey

Scripture Reference: Romans 8:31-39, Ecclesiastes 3:1-2



Lessons From Isaac's Birth



From the account of Isaac's birth there are many important lessons we should learn. Five are extremely significant.



First, God is in no hurry to work out His plans. He is never too late; He is always on time. Man frets and worries and is always in a hurry to work out his plans.



Second, God is Almighty. Nothing can hinder or thwart the outworking of God's purpose. Abraham was old and Sarah was barren, but these obstacles presented no difficulty to God.



Third, God is faithful. He promised Sarah a son. From the standpoint of human reasoning, it seemed like a foolish promise. However, the promise of God was sure because He is always faithful in keeping His promises.



Because God's word is absolutely sure, in times of doubt and discouragement we need to come to the Word of God to check our spiritual lives and to remind ourselves of His faithfulness.



Although we may not be able to understand how God can fulfill His promises to us, our attitude should be: If God says it, that settles it.



Fourth, faith is tested so it might be proven to be genuine. A faith that cannot endure trial is really no faith at all.




Fifth, God has a set time for everything. It is important that we learn this lesson well. God has an appointed time for accomplishing His will. Nothing is left to chance.



"To every thing there is a season, and a time to every purpose under the heaven: a time to be born" (Eccles. 3:1,2).

Wednesday, February 23, 2011

I Think Cyclosporine Was Made By HMO's

Just like prednisone. Looks good at first. Sounds great at first. May even save your life...and then. The side effects kick in. Right now, the cyclosporine is causing my blood sugar to be RIDICULOUSLY high. Like WAY high. Higher than prednisone unless I'm on 30mgs or more of the Prednisone. I have almost constant cramping in my hands now, my calves are ready to seize up any minute...I've had a headache since I started taking it...I feel like crap. But I can breathe. So is that the trade off? I'm waiting for my neurologist to call. I'm ready to quit taking the stupid stuff, so unless he has a REEEAALLLLLY good reason not to, I'm done.

Some folks won't be happy because they think I give up when things "take work." Well, I'm not going to be in pain 24/7 and go blind from high blood sugar because they think I give up too easily. Let them live like me for one day.

Anywho. He's a funny that I saw a loooooong time ago, and thought it was appropriate for the way I feel right now:


And God populated the earth with broccoli and cauliflower and spinach and green and yellow vegetables of all kinds, so Man and Woman would live long and healthy lives.

And Satan created McDonald's. And McDonald's brought forth the 99-cent double-cheeseburger. And Satan said to Man, "You want fries with that?"

And Man said, "Super size them." And Man gained pounds.

And God created the healthful yogurt, that woman might keep her figure that man found so fair.

And Satan froze the yogurt, and he brought forth chocolate, nuts and brightly colored sprinkle candy to put on the yogurt. And woman gained pounds.

And God said, "Try my crispy fresh salad."

And Satan brought forth creamy dressings, bacon bits, and shredded cheese.

And there was ice cream for dessert. And woman gained pounds.

And God said, "I have sent your heart healthy vegetables and olive oil with which to cook them."

And Satan brought forth chicken-fried steak from Cracker Barrel so big it needed its own platter. And Man gained pounds, and his bad cholesterol went through the roof.

And God brought forth running shoes, and Man resolved to lose those extra pounds.

And Satan brought forth cable TV with remote control so Man would not have to toil to change channels between ESPN and ESPN2. And Man gained pounds.

And God said, "You're running up the score, Devil." And God brought forth the potato, a vegetable naturally low in fat and brimming with nutrition.

And Satan peeled off the healthful skin and sliced the starchy center into chips and deep-fat fried them. And he created sour cream dip also.

And Man clutched his remote control and ate the potato chips swaddled in cholesterol. And Satan saw and said, "It is good."

And Man went into cardiac arrest.

And God sighed, and created quadruple bypass surgery, angioplasties, and stints . . . . .

And Satan created HMOs...

Tuesday, February 22, 2011

I Got Nothin'

Worn out today.

Interviewed a new PCP yesterday...I liked him. Hopefully this one will be better than the last. Even so, just going to the doctor completely wiped me out. The GOOD news is that I have not had any further complications from my cold!

But the MG itself...the fatigue specifically, is overwhelming today. Off to take a nap.

Monday, February 21, 2011

The Me Project and Giveaway


The Me Project-21 Days to Living the Life You've Always Wanted
Publisher: Harvest House Publishers
ISBN-10: 0736929665, ISBN-13: 978-0736929660
Release Date: February 1, 2011
Paperback: 224 Pages, Retail $12.99



Book Summary
(San Jose, CA) Has that rush to make (and break) New Year’s resolutions already waned? According to Daniel Pink, author of Drive: The Surprising Truth About What Motivates Us, taking small steps every day will not only help you stay committed to your goal, but will also help you ultimately achieve that goal when obstacles come up. Author Kathi Lipp wants you and your friends to live out those dreams—and have some fun along the way.

As women, we forget the goals and dreams of our younger years. The busyness of everyday life gets in the way. To-do lists replace goals. The Me Project provides women with fun and creative ways to bring back the sense of purpose and vitality that comes with living out the plans and dreams God has planted in our hearts. Kathi Lipp’s warm tone and laugh-out-loud humor motivates women to take daily steps toward intentional goals. The end result? We get back our lives and enjoy living in the confidence of a purposeful life in spite of our chaotic schedules.

This handy guide coaches women to do one simple thing toward achieving our goals each day for three weeks. A woman experiencing the exhilaration of a rediscovered life offers more as a wife, mother, friend, volunteer, career woman.

Finding the balance between living day-to-day with purpose while pursuing the passions God has placed in our hearts is a delicate pursuit. In this refreshing, insightful book, Kathi lays out a doable plan that makes sense and helps make our God-given dreams a reality. Never stop dreaming, because women who dare to dream do make the world a better place.
—Jean Blackmer
author of MomSense: A Common Sense Guide to Confident Mothering
Publishing Manager, MOPS International www.MOPS.org

Author Bio
Kathi Lipp
Kathi Lipp is a busy conference and retreat speaker, currently speaking each year to thousands of women throughout the United States. She is the author of The Husband Project and The Marriage Project, serves as food writer for Nickelodeon, and has had articles published in several magazines, including Today’s Christian Woman and Discipleship Journal. Kathi and her husband, Roger, live in California and are the parents of four teenagers and young adults. For more information visit her website: www.kathilipp.com


Grand Prize Giveaway:
Deluxe Starbucks Coffee Gift Basket


  • Three 2.5-oz. bags of Starbucks coffee
    (Sumatra, House Blend, and French Roast)
  • Tazo black tea
  • Starbucks marshmallow cocoa
  • Almond roca
  • Almond roca buttercrunch toffee cookies
  • White chocolate and raspberry cookies
  • 2 Starbucks mugs
  • Keepsake black bamboo basket
$62 value

All you have to do to be entered in the giveaway is leave a comment on this post. Grand Prize winner will be announced March 7, 2011. Good luck!

Sunday, February 20, 2011

How Are We Measuring Ourselves?

I read an article in the Reader's Digest this morning by Clayton M. Christensen, excerpted from the Harvard Business Review. The last point he made really struck me:

"Choose the right yardstick: Don't worry about the level of individual prominence you have achieved; worry about the individuals you have helped become better people. This is my final recommendation: Think about the metric by which your life will be judged, and make a resolution to live every day so that in the end, your life will be judged a success." {emphasis mine}

And for some reason, I don't think he was talking about financial or personal success. I think he was talking about something near and dear to me: helping others. At the end of time, when we all stand before God and give account for our decisions, do you really think He will want to hear about the amazing investment you made in the stock market? Do you think He will want to know how many outfits you had? How many properties you acquired? How many speeches you made? How powerful you became at work?

I don't think so. I think He will want to hear how you dealt with your friend who needed you when her marriage was falling apart.

I think He will listen with rapt attention when you tell Him how you brought groceries to a newly single mom who couldn't feed her children.

I think He will want to hear about the elderly woman you helped by shoveling her driveway.

I think He would LOVE to know about how you gave of your time and talent to help those in need. You can't take things with you. You CAN take relationships.

Our lives are not meant to be lived in isolation. We are a communal people. (Not like commune, like community!)

Acts 20:34-35 says, "You yourselves know that these hands of mine have supplied my own needs and the needs of my companions. In everything I did, I showed you that by this kind of hard work we must help the weak, remembering the words the Lord Jesus himself said: ‘It is more blessed to give than to receive.’

When I started blogging, it was mostly for therapeutic reasons. I needed an outlet for my frustration, pain...for all of my feelings good and bad. I never imagined what it would turn into: a vehicle to meet amazing people from all over the world, a place where I can encourage and be encouraged, and most importantly, something that has opened my eyes to the true meaning of the body of Christ.

The body of Christ is not the same as the church. It used to be. The body of Christ can be anywhere. And the body has many parts. Many of you have become the hands and feet of Christ in MY life, and if not in mine, in others'. Thank you for that.

The body of Christ consists of people who love God and want to do what's important to Him. And that is taking care of people. What did Jesus say was the most important commandment? Love the Lord with ALL of your heart, ALL of your mind, ALL of your soul, and ALL of your strength. And what came next? Love your neighbor as yourself.

Who is your neighbor? Anyone you come in contact with. How do you treat yourself? Are you fed? Are you clothed? Are you warm? Are you in good company? Are you content? Are you safe?

So should our neighbors be. What can we do today to love our neighbors as ourselves?

Saturday, February 19, 2011

Upcoming Blog Tour

I am going to be participating in my first blog tour on Monday! I am hoping I do everything correctly, but come back to check it out, because it's a really cool author, and a really cool book!

I am feeling a little better, thank the LORD! My voice had been hoarse (much worse than "usual") for like a week leading up to this, so maybe I had something back then. If I can avoid the whole chest involvement and cough, I'll be golden. If not, I'll be back asking for lots and lots and LOTS of prayers!

Going to rest...but make sure you check back Monday!

Friday, February 18, 2011

Feeling Like Toast

On my facebook status: "Dear Lord, Please take me out of the fire. I'm done."
Second status: "According to WebMD, my symptoms mean I died 3 years ago."

Yup. I'm sick. Well, on top of my normal daily joy, I've contacted a cold. I feel awful. Waiting for my darling hubby to bring lunch home and I will go back to bed.

Now we see what happens to people without immune systems when they get sick. Here's hoping it's not THAT bad.

Thursday, February 17, 2011

Update On Medicine and Stuff

Well, I have slept for FOUR nights in a row, at least 6 hours. Woot! Woot!

This disease is very puzzling however. My arms are weaker than they have been in YEARS. I still don't really have much stamina or energy. My breathing is much better, which is FANTASTIC, and obviously sleeping helps! : ) My emotional state is MUCH improved, so even though I'm not as strong as I want to be, I'm not like borderline suicidal. Which is always a good thing.

It's just crazy...I don't really know if the cyclosporine is helping, and the side effects are crappy... (charley horses being the worst). So what to do?? Another cool thing is that I haven't have pheresis in almost 6 weeks, and I haven't gotten any worse, so that's awesome.

I have to get blood work done tomorrow morning for the cyclosporine levels, so I guess we'll see then if it's measurable in my blood, and it if IS, if it's worth continuing. Although we've spent so much stinkin' money on it....

I've also just started sneezing my fool head off, and blowing my nose every 2 or 3 minutes. I'm PRAYING it's just a ridiculous allergy attack! Well, I guess that's it for now....we'll see what the blood test says and go from there.

Wednesday, February 16, 2011

The Cab Ride

Hey all...I got this in e-mail this morning. If you're like me, grab a tissue. This is so awesome.


Cab Ride

I arrived at the address and honked the horn.
after waiting a few minutes
I walked to the
door and knocked.. 'Just a minute', answered a
frail, elderly voice. I could hear something
being dragged across the floor.

After
a long pause, the door opened. A small woman in
her 90's stood before me. She was wearing a
print dress and a pillbox hat with a veil pinned
on it, like somebody out of a 1940's
movie.

By her side was a small nylon
suitcase. The apartment looked as if no one had
lived in it for years. All the furniture was
covered with sheets.

There were no
clocks on the walls, no knickknacks or utensils
on the counters. In the corner was a cardboard
box filled with photos and
glassware.

'Would you carry my bag
out to the car?' she said. I took the suitcase
to the cab, then returned to assist the
woman.

She took my arm and we walked
slowly toward the curb.

She kept
thanking me for my kindness. 'It's nothing', I
told her.. 'I just try to treat my passengers
the way I would want my mother to be
treated.'

'Oh, you're such a good
boy, she said. When we got in the cab, she gave
me an address and then asked, 'Could you drive
through downtown?'

'It's not the
shortest way,' I answered
quickly..

'Oh, I don't mind,' she
said. 'I'm in no hurry. I'm on my way to a
hospice.

I looked in the rear-view
mirror. Her eyes were glistening. 'I don't have
any family left,' she continued in a soft
voice.. 'The doctor says I don't have very
long.' I quietly reached over and shut off the
meter.

'What route would you like me
to take?' I asked.

For the next two
hours, we drove through the city. She showed me
the building where she had once worked as an
elevator operator.

We drove through the
neighborhood where she and her husband had lived
when they were newlyweds She had me pull up in
front of a furniture warehouse that had once
been a ballroom where she had gone dancing as a
girl.

Sometimes she'd ask me to slow
in front of a particular building or corner and
would sit staring into the darkness, saying
nothing.

As the first hint of sun was
creasing the horizon, she suddenly said, 'I'm
tired. Let's go now'.

We drove in
silence to the address she had given me. It was
a low building, like a small convalescent home,
with a driveway that passed under a
portico.

Two orderlies came out to
the cab as soon as we pulled up. They were
Solicitous and intent, watching her every move.
They must have been expecting her.

I
opened the trunk and took the small suitcase to
the door. The woman was already seated in a
wheelchair.

'How much do I owe you?'
She asked, reaching into her
purse.

'Nothing,' I
said

'You have to make a living,' she
answered.

'There are other
passengers,' I responded.

Almost
without thinking, I bent and gave her a hug. She
held onto me tightly.

'You gave an
old woman a little moment of joy,' she
said.
'Thank you.'

I squeezed her
hand, and then walked into the dim morning
light.. Behind me, a door shut. It was the sound
of the closing of a life..

I didn't
pick up any more passengers that shift. I drove
aimlessly lost in thought. For the rest of that
day, I could hardly talk. What if that woman had
gotten an angry driver, or one who was impatient
to end his shift?

What
if I had refused to take the run, or had honked
once, then driven away?

On a quick
review, I don't think that I have done anything
more important in my life.

We're
conditioned to think that our lives revolve
around great moments.

But great
moments often catch us unaware-beautifully
wrapped in what others may consider a small
one.

PEOPLE MAY NOT REMEMBER EXACTLY
WHAT YOU DID, OR WHAT YOU SAID ~BUT~THEY WILL
ALWAYS REMEMBER HOW YOU MADE THEM
FEEL.

You won't get any big surprise
in 10 days if you send this to ten people. But,
you might help make the world a little kinder
and more compassionate by sending.
it on and
reminding us that often it is the random acts of
kindness that most benefit all of
us.

Thank you, my
friend...


Life
may not be the party we hoped for, but while we
are here...we might as well dance.

Tuesday, February 15, 2011

Working in the Heart

"Most of the grand truths of God have to be learned by trouble; they must be burned into us with the hot iron of affliction, otherwise we shall not truly receive them." - Charles Spurgeon

Whoa. Seriously. How true is this? If we never experienced pain, would we even know joy? If nothing ever cost anything, how could we appreciate value?

If nothing ever died, how would we cherish life?

If there were no darkness, how could we embrace light?

If there were no hatred, how could we comprehend love?

Deep thoughts today, I suppose. Patty Ann over at Pitterle Postings has an amazing post you MUST read. Check it out here. It totally got me thinking.

I've been down this road before, where I have said that I am thankful for what I have been through because it has shown me so much. About myself. About others. About God. About love. Not all of what I have learned has been good, especially about people, including myself!

Whether your belief system says God "sent" me this disease, or "allowed" it to happen, it doesn't much matter, as the end result is the same: He is Sovereign. He knows best, and He knows what it takes to get my attention, and keep it. And for that, I truly am eternally grateful.

So a huge thank you, to those hearts of whom God has spoken to, who are helping me and my family. Thank you for being the light in my darkness. Thank you for listening to His whispers, (or as it would have been in MY case, His shouting and beating over the head with large objects....I don't always listen so well.)

So when you get discouraged, just remember: God KNOWS what He is doing. I PROMISE. I know it may not feel like it at the time, but He does. And He wants what's BEST for you. Think of someone you love with all of your heart. The BEST things you could possible imagine wanting for them are nothing compared to what God wants for YOU. Believe it.

Monday, February 14, 2011

What's the REAL meaning of Valentine's Day?

Well, about the only thing that seems to be consistent about the history of Valentine's Day is that it has to do with a Roman Christian named Valentine who was martyred in the 3rd century. From there, the accounts change...

One says that Valentine was imprisoned for not worshiping the Emperor. While in prison, the jailer's daughter, who was blind, was healed when Valentine prayed for her. Forty-six people believed in Jesus, and the Emperor was so mad that he had Valentine beheaded. The story goes that he sent a letter (while he still had his head, of course!) to the jailer's daughter signed "Your Valentine" and that's why we send Valentines today.

Some accounts say he was in love with her, some don't.

Other accounts tell of THREE different martyrs named Valentine who are honored by this day. Some accounts tell of Claudius II (I think) who thought that single men made better soldiers, so he outlawed marriage. (This is still like 4th or 5th century.) A priest named Valentine secretly married young couples against the Emperor's decree, so he was put to death.

I guess my point is that Valentine's Day isn't a Hallmark Holiday (like MANY other days.... Sweetest Day, Secretary's Day, Boss's Day, etc). There is a history.

But the life of one martyr comes to mind that we KNOW is true: the life of Jesus Christ. His love for us was so overwhelming that He chose, yes CHOSE to die a horrible, cruel, punishing, painful death, so that we might have eternal life.

"When we were utterly helpless, Christ came at just the right time and died for us sinners. Now, most people would not be willing to die for an upright person, though someone might perhaps be willing to die for a person who is especially good. But God showed his great love for us by sending Christ to die for us while we were still sinners." Romans 5:6-8 NLT

I wonder if I would have the courage to die for someone I love. I would hope so. But I DO know I can demonstrate that love by how I live my life. Even with chronic illness, dealing with depression and discouragement on a regular basis, I REALLY want the overall sum of my life to be about love and hope. I have bad days. I will continue to have bad days. But I so pray that the good outweigh the bad, and that I encourage more than I let down.

So today, let's try to love like Jesus. Love the unlovable. Love those who are different. Love those who DON'T love you. You don't need to tell them. Just show them.

Sunday, February 13, 2011

Epic Fail

SO I asked my husband if he wanted to go for a drive since it's like 40, and it's been like NEGATIVE 10 for the last week. He says, "Why do you always want to go for a drive? [the last time we went for a drive was about 3 or 4 months ago to look at the colors on the trees] OLD people go for drives."

As understanding as he is [most of the time], when he says stuff like that I want to SLAP him. Why would I want to go for a drive on a beautiful, sunny, WARM February day? Maybe because I haven't been out of the house forever? Maybe because I can go outside without my lungs bleeding from the frigid air? Maybe because we would be spending time together as a family? Maybe because I'm sick of smelling paint? Maybe because I can't do anything else?

So I decide I'll go by myself. He was going to take Jacob outside and spray our fruit trees, which are behind the barn, which I can't walk to. So I would be stuck in the house, again, alone, with no energy to do anything.

I asked Doug to get the van out of the garage for me, because I can't lift the door. I get dressed, and am exhausted. Have to rest for a while. Too stubborn to admit I can't drive, ESPECIALLY after Doug says, "I thought you were leaving." Arrrgghh.

So I go. Right away I know I'm not going far. My arms are too weak to hold the wheel on our sh!tty bumpy country roads. So I drive around the block and come home. Granted, it's a country block, so it took ten minutes, but still. I'm just pissed. I hate this stupid disease.

Saturday, February 12, 2011

Good Ol' Maxine

Let me get this straight...
We're going to be "gifted" with a health care
plan we are forced to purchase and fined if we don't,

Which purportedly covers at least ten million more people,
without adding
a single new doctor,
but provides for
16,000 new IRS agents,

written by a committee whose chairman says he doesn't understand it,

passed by a Congress that didn't read it but exempted themselves from it,

and signed by a President who smokes,

with funding administered by a treasury chief who didn't pay his taxes,

for which we'll be taxed for four years before any benefits take effect,

by a government which has already bankrupted Social Security and Medicare,

all to be overseen by a surgeon general who is obese,

and financed by a country that's broke!!!!!

'What could possibly go wrong?'

Thursday, February 10, 2011

Great Dane???

I don't know what's up with this post, but I can't get the type to behave. Pic. #1 is Blackie. The 2nd one is a Great Dane, Black Lab Mix. The third is a full blood Great Dane, and the last is Blackie, with Jacob and Isaac outside on the sled. SO....we're pretty sure we have a Great Dane Black Lab mix! But we love him! I always wanted a big dog.....






Wednesday, February 9, 2011

Gratitude

Ya know, we ALL have a lot to be thankful for. But I feel like this week, I have EXTRA blessings to be thankful for. First, for the people who have stepped up to help my family. What a blessing. The relief in knowing that some of our needs are going to be met right away is HUGE. Frankly, if it were just Doug and I, I would find a way to manage. Doug would be a bit more stressed out with cleaning and stuff, but since we have Jacob, I take a lot on myself.

I am homeschooling Jacob. To know that at times I will have people to come and clean my house, to know that if Doug is really late I can throw a decent, home-cooked meal in the freezer, to know that I can concentrate on my CHILD, being a MOM....I really can't describe what that means to me. The hardest thing about my illness is having to look into the big blue eyes of my precious baby boy and say, "Mommy's not feeling good today honey. I can't."

If I don't have to focus so much on worrying about how everything will be getting done, or waiting for Doug to get home so Jacob can get a little bit of attention...To just be able to focus on Jacob....it's bringing tears to my eyes.

Those that are helping us are doing FAR more than cleaning a bathroom or bringing a meal. They are allowing a family to spend time together. They are helping a husband and wife have some peace, and be able to reconnect, to talk without total exhaustion taking over.

A precious lady we don't know sent us $50.00 in the mail with a Valentine's Day card. What I really love too, is what this is doing for my husband. He is being encouraged!! Doug is by nature a skeptic. And a pessimist. (He would say realist... : ) Seeing these things happening, seeing people volunteer to help us, seeing an old grandma send money to 2 "kids" she doesn't know....it is renewing HIS heart as well. And for me to see THAT, now that's cool.

So again, from the bottom of my heart: thank you.

Wherever you are, won't you see if there's someone YOU can encourage today? Maybe it's a neighbor you haven't seen in a while. Maybe it's a cousin or aunt you haven't talked to in forever. Maybe it's the homeless guy on the corner you see every single day. What can YOU do? Serve at a soup kitchen for a meal? Help out at a homeless shelter? Help out at the Humane Society or Animal Rescue? What about someone in your church? Could they use a card just to say, Hey, I'm thinking about you?

I guess my point is that you don't have to go out and save the world. It's like the little boy walking along the beach that is filled with starfish. He's walking with his grandpa, stopping every foot or so to pick up one starfish and throw it back into the sea. His grandpa said, "What are you doing, son? You can't save 'em all." And the little boy looked at the one in his hand as he threw it back in and said, "No, but I can save this one."

How about you? Can you save one?

Tuesday, February 8, 2011

Update and Thanks

First can I just say THANK YOU. Your prayers are being felt, and answered. Thank you for your encouragement and support. Thanks for loving me even though some of you have never "met" me. Thank you.

A dear friend of mine sent out an e-mail letter asking friends and family to pray about helping out over here, making a meal, etc., and there was an IMMEDIATE reply by a cousin of ours to come every Tuesday from 11-2 (That's the toughest part of the day for me). I was blown away! Thank you, thank you Karen, you precious thing! By the way, Karen also makes AMAZING cakes! Check out her blog KarTer Kakes.

Also got in touch with one of the volunteer organizations, and someone will be coming out this Friday for 2 hours to clean! Thank you Lord!

I talked to my neurologist, and we're going back to the 25mg capsules of the cyclosporine, 2 in the AM and 2 in the PM for 3 days, then 2 in the AM and 3 in the PM for at least a week, and then we'll do blood work to see about the cyclosporine levels in my blood. I think they doubling it was too much too soon, and since I was doing okay on the smaller doses, I'm willing to give it a try. It's frustrating though, because we just spent almost $200.00 on the 100mg pills, and there's no way to get that back. We have an HSA account, but still...it's getting LOW already, and it's barely February!

Oh well, I am learning that everything will work out. God has my back! I am grateful and humbled that no matter what MY faith level is, God IS truly faithful. It may not be MY way or MY time, but it is the Best Way and the Best Time.

If I may be so bold as to ask for your continued prayers, specifically that the cyclosporine does NOT give me any problems like the larger doses did, and that the charlie horses stay manageable if I have them at all. I hope you ALL know how much I appreciate your friendship, encouragement, and prayers. God bless you!!!

Monday, February 7, 2011

Waiting On The Neurologist

Well, I stopped taking the Cyclosporine last night. I didn't take the PM dose and I feel SO. MUCH. BETTER. Oh my WORD. I felt like I was being poisoned. Doug said I might have to feel that way. I said, Um, Nope. I know my body and I know what's NOT working.

I have to say thank you for all the beautiful comments and e-mails...I love to encourage others, but it's hard to encourage myself sometimes, ya know? You guys gave me so much encouragement....your beautiful words did not fall on deaf ears. I heard them. I felt them. I appreciated them so much... and all of YOU! Thank you.

I am not going to stop taking all my meds, no worries. I did however, as I said, stop taking the cyclosporine, and feel like a different person already. I called the neurologist to find out what the next step will be. Don't know what that's going to be, but I can tell you it's not going to be cyclosporine! : )

Thanks again for being on my team, friends. For being my cheerleaders. My heart is mending!

Sunday, February 6, 2011

Not In A Good Place Today

This morning has not been stellar. When I got up, I took my Fosamax (which I had completely forgotten about) and had to wait 30 minutes to eat. My blood sugar dropped, so I started feeling weird. Then I had to rush to the bathroom (courtesy of Cyclosporin side effects). I tried writing on a crossword puzzle and my hands were shaking so much I couldn't write legibly. That could either be from the low blood sugar or the Cyclosporine; likely some combination of the two.

Then I choke at breakfast. I'm just like SO OVER all of this. I take 29 pills a day now. TWENTY NINE. Everything has side effects. I'm on insulin because I'm diabetic. I'm diabetic from all the steroids. I've been given huge doses of steroids and am on a steroid now because of the MG.

I have oesteoarthritis and osteoporosis from all the drugs I take. So I have to take Fosamax, Calcium, and Vitamin D in huge doses. Have to take Prilosec to protect my stomach from all the medication, but it's still on fire half the time the last 3 or 4 days.

I take CellCept, Prednisone and Cyclosporine to suppress my immune system. That means I could die from the common cold. The Cyclosporine gives me wicked charlie horses, and tremors. I've had the "shakes" for a while now, but the Cyclo. seems to have made them worse.

I take acidopholous so I don't get a yeast infection from all the drugs. Have to use medicated powder on my skin to prevent yeast on my skin. YUCK!

I take a handful of things at night to try and help me sleep because several of the prescriptions I take cause insomnia.

If I did not have MG, I would only take my multi-vitamin, anti-depressants and allergy pills.

Every day I take out my pill box and sigh as I swallow one. after. another. Oh my GOSH I'm so sick of it. I can't imagine all the crap in my bloodstream and how it's affecting other systems in my body. Many of the drugs are processed in my liver and kidneys. They can't last forever.

When do you stop? I'm not having pheresis right now, because it didn't seem to be doing much, but otherwise I'd be having all my blood sucked out of my body every 3 weeks as well. Without the pheresis, my cholesterol will go crazy high, and they'll want to put me on a statin (they've already broached the subject, but pheresis always fixed the problem, so they didn't push).

I'm not taking it. There are too many side effects (like weak muscles!) AND I can't take a statin with the cyclosporine anyway.

How much medication is too much? Do you go for quantity of life even if you're pickled and miserable? How much is one human, earthly, fallible body supposed to handle? Fifty years ago I'd already be dead. So just because we CAN, we keep going? Or is that what God intended? That medication is to be the be-all, end-all?

If I stopped taking everything....then what? I get so weak I can't do anything, can't breathe...I wouldn't just drop dead I would slowly suffer. But I'm suffering now. What a choice.

Friday, February 4, 2011

Random Letters

Dear Mr. Sandman,

Okay. This is like my third letter to you in as many months. What is UP?? My child did not sleep well last night. In fact, it was like you weren't even here! Do I need to speak to your supervisor?

Sincerely,
Sleepy Mom


Dear Weathermen:

It's winter. It's going to snow. Settle down.

Sincerely,
Sick of the Hype



Dear People who Live in States Where it Snows in the Winter:

It's winter. It's going to snow! You don't HAVE to go to the grocery store and stock up on toilet paper and water. The store will be there tomorrow after the plows come out. You don't need to fill up every gas can you've ever owned either, unless you're planning to use them immediately. You see, when it's cold, and there's lots of precipitation, it's going to be snow.

Remember when we were little? We put bread bags on over our socks and shoved them in out boots to keep them dry. Then we walked to school. Uphill. Both ways. With no mittens. Or hats or scarves, Or even jackets sometimes. Okay, you get the point...But we DID walk.

Sincerely,
Confused Over Why People Think Snow In February is a Peculiarity in Michigan


Dear People Who DRIVE in States Where it Snows in the Winter:

Every year it's the same thing! The first time it snows, hundreds of people go off the road. You've lived here for 25 years. Can you not recall the first snowfall from last year? How about the last? Here's a little clue for ya: When snow falls on the road, it's going to get slick and icy. Cars+slick and icy= SLOW DOWN OR CRASH.

It's not rocket science people.
Sincerely,
Perplexed at Poor Driving


Dear Plow Truck Driver,

I must say I am very impressed with you so far this year. Our taxes actually went up last year for "road improvements" and I believe they are actually using the money appropriately! You ARE still part of the government, though, so I retain the right to take that back. Thank you for plowing my road before the 4th day after the storm. You ROCK!

Sincerely,
Your Biggest Fan

Thursday, February 3, 2011

The Dilemma of the Church and Chronic Illness

More and more I hear about people disillusioned with the four walls of the church as they know it. Because churches are human run institutions, they are fallible, no doubt. And that really isn’t anyone’s FAULT, per se; however, I think that there needs to be a return to the New Testament way of thinking when it comes the church.

We all know Matthew 25:34-40 by now, about clothing the naked, feeding the hungry, caring for the widow and orphan, visiting the sick and imprisoned. I’ve spouted off enough about it in the last 2 months that anyone who reads this blog is probably sick of it. : )

But please bear with me…this is so important. The New Testament church was a brand new thing. People met in their homes. They took collections for the poor. They took care of one another. No one “didn’t have time” to help.

If there is one thing that I think “modern” American churches are lacking, it’s taking care of one another. We have this program and that function; this policy and that office. We have human interpretations of the Bible, which will inevitably lead to controversy. So we go to a different church. And we start all over again.

Last week I was talking with a pastor’s wife about my situation and church experiences (she had asked about them). During the conversation she said, “Okay, I have a question, no two questions. Are YOU comfortable going to visit people in the hospital? And how much is enough?”

After I picked up my jaw, I told her that I cannot safely GO to the hospital and visit sick people, but if I were healthy, it wouldn’t matter if I was comfortable or not (which I would be) I would do it. Jesus never said doing the right thing was comfortable.

And how much is enough? Good question. Unless God heals me this side of heaven, I will always have this disease and always need help. So if the body of Christ cannot help me, who then? Do I go to a nursing home as a 40 year old wife and mother? Does my husband quit his job to be my caregiver? We can’t afford to hire a private caregiver. Most people couldn't.

What about the person who isn't married? Doesn't have a sister or brother to come and help? Whose parents are gone? What about the man who lost his job because of his illness, and has to support his family? What about the person who has NO ONE?? What happens to them?? They can't get to church because they can't drive. They are too ill to go somewhere alone, but not ill enough for a hospital or nursing home? These people need HELP.

How much? Now before I continue, I want to say something, and it’s NOT to toot my own horn. I guess it's more to show that EVERYONE can do SOMETHING. I am not the kind of person who finds it easy to ask for help. And I’m also not one to stand with my hands out giving nothing in return. I do what I can from home. I have corrected Bible lessons through Crossroad Bible Institute for just over 10 years now. They have a wonderful prison ministry wherein they send Bible lessons to inmates all over the WORLD. The inmates then send their completed lessons back to CBI, who sends them on to instructors like me. I correct them, answer any questions the student may have (and some of them are TOUGH questions!) and send it back to the inmate using CBI’s return address.

I have also sponsored a child in Sri Lanka through Christian Children’s Fund (now Child Fund) for about 13 years. I actually am on my second child, because the first one completed school and got a job!

I know some people (hopefully no one who knows me well) are probably thinking, well, she’s preaching all right, but what has she done? Now you know. My husband and I help out people as much as we can…Doug always gives meat to his parents either from the deer he hunts or the cows we now raise. He doesn’t do this because they are his parents, but because they really need it.

So. How much is enough?

What was “enough” for Jesus? When did He stop healing? Serving? Loving? Encouraging?

“We know what real love is because Jesus gave up his life for us. So we also ought to give up our lives for our brothers and sisters. If someone has enough money to live well and sees a brother or sister in need but shows no compassion—how can God’s love be in that person? Dear children, let’s not merely say that we love each other; let us show the truth by our actions. Our actions will show that we belong to the truth, so we will be confident when we stand before God.” I John 3:16-19 NLT

No one is Jesus. I get that. But if we all gave one week…or one day…or one afternoon…or one HOUR…together, we can be “Jesus with skin” to someone desperately needing to see Him. It’s time for the Body of Christ to come together and act like a body, instead of an institution.

Wednesday, February 2, 2011

Never Again To Use Dried Beans

Oh good gracious. I decided to buy dried northern beans instead of the jarred kind for making white chili. NEVER AGAIN!!! Oh my GOSH! I soaked them according to the directions...exactly. THEN, they were in the crockpot for like 5 hours....dinner Monday night: NOT ready. The beans were will still hard as pebbles. Doug scrounges some boxed pasta and frozen meatballs (which trust me, after homemade pasta, is HIDEOUS!).

So after being in the crockpot ALL night, they're still hard, but starting to soften a LITTLE. They cooked ALL day. A total of like 29 hours. Dinner night number 2: BURNED. Doug scrounged something else. Thank God for boxed rice and frozen chicken. AAAHhhhhh!!!!!! I'm never buying dried beans again...except for art projects!

On a completey different note, I heard back from the neurologist, and they want me to double my cyclosporine. I'm a little nervous about that because of the horrible charlie horses I have been having. So, I'm am asking that you please pray that I can double the meds without any further side effects. Yesterday was kind of a bad day for cramping...my arms and hands especially.

THANKS!

Tuesday, February 1, 2011

My Brother, My Hero

Ug. The love-hate relationship with my computer continues....

My brother was online and I was talking with him on google chat (he lives in California). Internet Explorer stopped working AGAIN, so I got back on and told him my computer was ticking me off. He asked what was happening, and then spent the next TWO HOURS remote controlling my computer getting rid of the viruses and malware. I thought I had anti-virus, but he said it looked like I had NONE. (He's a self-employed computer guru.)

Out of "X" number of files I had 251 infected ones! Sheez. There are still a few issues, but the BIG ones, like all the nasty ads on facebook....are GONE! YAY! And it's much faster. MUCH.

Heard from the neuro's office....my bloodwork is so far so good...there are no signs of kidney problems, Hallelujah! There is actually no measurable level of cyclosporine in my blood yet, and my immune system doesn't show suppression from the cyclo. SO, that either means I'm just going to keep feeling better as more of it gets into my system, OR it's working without further suppression of my immune system, which would be awesome. I'm just waiting to hear back from the neuro on what's next. He'll probably want more bloodwork before changing the dose...that's my thinking.

I also get to decrease my prednisone on Sunday...from 10mgs every day to 10 mg/5 mg every other day. That may not sound like a lot, but it really is. It will help with my blood sugar, moodiness, hunger...which is already starting to abate...FINALLY!!!!

So other than the blizzard warning and expected 18+ inches of snow in the next 24 hours, I'm all good!