What A Day!

Good grief. Nothing can ever be simple, can it? This day has been one of those days. Even my coffee this morning was not cooperating. I got grounds in my coffee. The coffee maker wasn't working right, so I tried fiddling with it, and in doing so, got a bunch of grounds in the cup. I'm too cheap to start all over (I use an espresso machine to make one HUGE really strong cup of coffee). So I fished some out and drank the rest.

And Mr. Jacob didn't do ANYTHING I asked him the first time. I've got to get back to hard core discipline with the child. I've been so weak and sick that it's been all I can do to keep him from playing in the road or burning the house down, let alone do things like use good manners, listen the first time, say, "yes Mommy" and do what you're told.

Found pheresis close to home, right? Right. Now I just have to jump the 17 hoops, and I can actually get it done. Called the blood people today to see if they got the referral from my neuro at U of M. Yup, but there's a note on it (from St. Mary's, not my neuro) saying that you need orders written by a doc from St. Mary's since that's where I'm having the pheresis, even though it's being done by a completely independent third party. {Sigh.}

So I call St. Mary's to find out how many fingers or toes it's going to cost to get orders for plasmapheresis written. Turns out they don't take body parts. They take more enjoyment out of TRUE torture: more hoops and paperwork. So NOW I have to get a referral from my PCP (who knows nothing about the whole process) to a neurologist at St. Mary's, whom I will have to probably make an appointment with, who will look at me for 10 seconds, after reading the records I'm supposed to get from the U of M (HA!), and write orders for pheresis.

So I call my primary's office and the office person answering the phone says he's going to want to see me. I'm like, no, I'm not seeing him, I just need this referral.

Office lady: "Well I'll take a message, but...."

Me: K. You do that. Write down exactly what I say."

Office lady: "Well...."

Me: "I need to get a referral to a neurologist at St. Mary's hospital because I get a treatment called plasmapheresis. Normally I go to Ann Arbor and St. Mary's is much closer. Michigan blood comes in to their outpatient department to do the procedure. It's pretty much all set up with me, my docs at U of M and the blood people. We just have to make St. Mary's happy."

Office lady: "Plasma ....what's the second word?"

Me: It's all one word. I'll spell it for you. Plasma p-h-e-r-e-s-i-s."

Office Lady: "So you need a referral for plasma-whatever-the-second-word-is to St. Mary's because it's closer. Is that right?"

Me: "Yes. The referral needs to go to the neurology department."

Office Lady: "Okay, I'll give him the message." {in that voice.....you know...the condescending one that says I-know-you-think-you-know-what-you're-doing-but-it's-not-going-to-work voice.}

Why can't people just do what I ask?!?!?!

So. Instead of a simple piece of paper from the U of M to the blood people, I now have to jump through all these hoops. Why? So the insurance companies are happy. That is the ONLY. Flippin'. Reason. Who else cares?

And who gets to handle all of this stressful bullcrap? Yup, me. Doug's out building chicken coops. At least he has Jacob. AND, one of my dumb dogs has a cold. So Doug took him to the vet yesterday to the tune of $80 some dollars. I want to curl up and find my happy place.
Cuz it ain't here right now!

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!

Things I Know For Sure

This post comes to you from the writing prompts this week from the infamous MamaKat.

One of the prompts this week was to write about things I know for sure. Well, in this world, there's probably more that I DON'T know, but there are many things I do.

I know for sure, that there is a God, that He loves me, that He has a plan for me, and even if I have to walk through the valley of the shadow of death here on this planet, He will be with me, and when this fleeting life is through, I will be in heaven, perfect, healthy, and happy.

I know for sure, that there are angels in my life in human form. Just a FEW of them are named Linda, Lori, Jessica, Grace, Patty Ann, Kerry, Karen, Shawn, Tina, Diana and Rachel. There are many more, but these have been encouraging me on a daily basis. Three of them I have never even met in person, but lift me up every single day. I love you girls.

I know for sure, that living with chronic illness on a daily basis is the most difficult part of my entire life. That there are days when I want to give up. That there are days when it's overwhelming, and I just want everything to go away.

I know for sure, that I never will give up. I don't have it in me. I've actually tried. It's lasted maybe a week. Then I get irritated with myself and pull myself up by the bootstraps, and start kicking butt and taking names again.

I know for sure, that the love of a mother for her child transcends understanding.


I know for sure, that only God can give you real peace. You can't buy it, earn it, steal it, or take it. You ask for it, and you receive it from Jesus.

I know for sure, that without the support of friends on this blog, friends from all over the world, I wouldn't be sane. Just when I think I'm ready to lose it completely, I get an e-mail, a card, a phone call, something....that someone cares about me, or that I have inspired them. Words cannot express the joy that brings to my heart. I want my time on this earth to make a difference. I want to leave a footprint of strength and courage and inspiration and education. I want my life to matter, whatever condition it may be in.

I know for sure, that every one of you reading this is precious. That YOU matter. That I appreciate you reading my words. That YOU may be, to a person like me, the most important person in their lives. That YOUR action however big or small, may impact another for eternity. And that, my friends, is a big deal.

You Can Get Almost Anything Online

Earlier I was filling out a survey a grad student had sent me and I realized how many of my answers had to do with the internet! My social life (mostly due to my health) is through the internet. I do 90% of my shopping on the net. I send cards (although I prefer the good old fashioned paper cards via snail mail!).

Speaking of shopping, there are millions of websites selling stuff. The ones I like are the ones that let you compare different websites. One was brought to my attention, and they have EVERYTHING. Like these sectional couches (which I happen to LOVE) or lift top coffee tables. How cool are those? You can store stuff in them and then just cover it up.

I remember an episode of Trading Spaces a long time ago where Doug did a zebra wall, but he painted it. He could have just gotten zebra wallpaper online! For those who want a bit more upscale decor, check out Candice Olson. There are some amazing pieces! A little too fancy for my quaint old farmhouse, but it sure is fun to look!

Thankful

I am so thankful for my computer. For technology. For people all. over. this. country. (who I so desperately wish were nearer) who have e-mailed me to encourage me. For people who I may have "known" through family or whatever, but who have become real-life friends that probably never would have without facebook.

I have met some of THE most amazing people in the last, say, 6-8 months. I've met a few that pretty much stunk as human beings as well, but more good than bad.

A new MG friend and I have been e-mailing back and forth....we are so very much alike in our personalities...we both have MG...and she has filled my heart with so much appreciation. She went to the altar for me this morning at her church service. She lives 1000+ miles away, but I feel like we are sisters. The Lord is using her, and others, to help me see all is NOT lost.

I'm still pretty darn frustrated, and upset, but I'm not quite so desperate. And that's a GREAT feeling.

I'm not going to get pheresis tomorrow...Jacob is sick. Plus I got a tip that I may be able to get pheresis locally by going through a blood program around here. So I'll be checking into that tomorrow. My mom and dad are leaving for home tomorrow. PRAISE GOD. I miss my mom a lot. She's a HUGE support to me not only emotionally but physically as well.

I'm so thankful for all of your prayers. SO SO thankful. Because there are times when I can't pray for myself because I'm just too angry or down, or whatever...and I know the Holy Spirit intercedes for me (Romans 8:26-27), but I know many of you have, and are, as well. And for that I will forever be grateful. Because I do not have it within me to go through this alone.

Life

I'm in a place right now where there is within my very soul an epic battle going on. The ultimate good versus evil. The consummate life versus death battle. Part of me is mad. Really, really mad. And I want to fight. Hard. And win.

The other part of me is completely spent. I feel like I have fought the good fight...I have run the race with all I had...and I just can't summon any reserves. I was feeling better yesterday than the day before. A friend came yesterday to take care of Jacob, which was wonderful, because I couldn't do it.

Then, 4 AM, Jacob comes in our room crying and coughing. Stuffy head. Runny nose. Cough. I'm like, really? Is this REALLY my freaking life?? It's almost laughable. If it weren't so pathetic.

I don't know what the Lord is trying to tell me. I really don't. I pleaded with God to give me a clear sign if I was NOT to go forward with the Rituxan. I don't do subtle. (I know, shocker!) I'm a hit-me-upside-the-head-with-a-2x4 kind of girl, and God knows that. So I pulled a Gideon. I put out the fleece. I got nothing. So I went ahead. And it was a big, fat failure. And I lost any ground I had gained health wise.

It's like, I'm not Paul. I can't stand in the cesspool, in chains, with poop up to my knees and sing Hallelujah. I just don't have the strength or character or something.

I believe God is good.

I believe He loves me.

I believe that He has a plan for me. I thought I knew what it was, but it included me healthy. So obviously I was wrong on that one.

I believe that God can use anything for my benefit.

I believe He wants what's best for me.

But for the life of me I can't understand why He won't just let me come up for air.

Oh The Joy

Heard back from neurology. Under no circumstances will they try the Rituxan again. I had such a small amount (by their standards) of the medication and such a severe reaction that trying again is not an option.

Back to plasmapheresis. So now I'm trying to find a local (within 50 miles) hospital that will do plasmapheresis outpatient so we don't have to drive 300 miles round trip every 3 weeks again.

I just called the "best and brightest" in town, the newest, shiniest, most modern hospital in Grand Rapids, (supposedly) and they don't do it. One other hospital MIGHT, but 1/2 the people who go there end up with MRSA, and half of them die, so I chose to decline.

Oh happy day.

Nothing New

Nothing new to post about. Couldn't sleep last night. Went to bed/sleep FINALLY about 3 AM. Slept til 10. Feel like I've been hit by a truck. Physically. Emotionally. Mentally. Spriritually. Just flattened. Like all of the air has gone out of a balloon. The balloon is still there, but you have to decide if you have enough in you to blow it back up or if you just want to throw it away. Because lying there on the floor, holding no air, not doing anything that it's capable of doing, the balloon is useless.

Rituxan: Epic FAIL

The Rituxan was unsuccessful. After they FINALLY got started, I ran for about an hour and a half when my throat started tickling. No problem, I read that can happen and not mean anything. They my eyes started itching. So I told the nurse. As she was contacting a doc there, I started having difficulty breathing. Allergic reaction. Big time. So they stopped the drug, gave me a bunch of stuff and I was ok.

They called my neurologist. I wanted them to try again but they wouldn't; my neuro agreed. He said he wants me to do pheresis for now while he figures out what to do. I am e-mailing him next. I wanted to go right to pheresis then, since we were already down there, he said no, I'd had enough trauma for the day.

I am upset.

I am angry.

I am frustrated.

I am stunned.

I was so sure this was IT.

I'm going to see if Dr. Teener will admit me to the hospital, give me a buttload of preventative drugs and try again.

Back to square one. I can't believe it.

We LOVE to Cook

Doug and I love to cook. Well, he mostly cooks, I bake a lot. I'm infamous for my one dish wonders (chicken and dumpling, lasagna, that kind of thing). For Valentines Day, I got Doug a chef coat. (He loved it, by the way!) We watch Chopped and Top Chef religiously. Doug is always trying to improve, do new things, and "present" beautiful plates. He's so precious!

The next thing I want to get him is a fancy spice rack. I LOVE this one.
What kind of spice racks do you like? This one is my absolute favorite. It's would just be on the on-the-counter kitchen spice rack, but I think it's totally cool. It even measures for you! How cool is that?
And of course there are cool wall mount spice racks too. I like this one a lot.
So, tell me about your spice racks. Do you have one? Where is it? Is it convenient? Right now we just have a draw that slides out, and a bunch of little ones laying in a small drawer as well. It's okay, I guess, it IS out of sight. But with fancy ones, I wouldn't mind having one out on the counter or on the wall!

Thinking Out Loud

You know how Black Friday is like the craziest day of the year as far as people go, pushing and shoving and trampling people (which I will NEVER understand). I imagine big concerts and stuff can be a little scary that way too, but I avoid crowds at all costs. Partly because of the germ factor, but a lot of it has to do with crowd control. Or rather, lack thereof!

I don't like to wait in line. However, I think that if there were some kind of stanchions in place, like velvet ropes or even those bars that have retractable belts, then it's more orderly, and people who truly are first in line can get through the door first. I mean, if they can do that at fancy nightclubs on TV to keep out the riff-raff they should be able to use them when it's really a safety factor, don't you think?

I remember going to a professional hockey game once, and we were herded through some kind of barricade that reminded me of a cattle shoot. The point is, it worked. It was total crowd control. I think more public places need this kind of stuff. They could find appropriate barricades that don't have to be menacing, (or cattle-like in any way), and even use it as advertising.

Just a thought. Now I feel like going shopping!

Monday, Monday

Haven't slept the best the last few nights. Just trying to hang in there until Wednesday. I know once this first treatment is over I will feel better (emotionally). I'm just keyed up, I guess. I didn't think I was, but I guess I am a little.

Then there's the "let's pick up the dog puke" game that we played three times today. SOMEONE needs to make indestructible dog toys. Plastic toys that dogs can eat that make them throw up should just be illegal. I love my dogs, but that's. just. wrong.

Phone call to the vet, phone call to my sister, my hubby, I've gotten exactly NOTHING done today.

Plus, my sister is having her gallbladder out tomorrow, and I'll be on my way to Canton, MICHIGAN (my brother thought it was Ohio)...it's just stressful. (And the weather is predicted to be freezing rain. Nice.) My folks are coming home early from Florida, but still....I just don't like being all scattered over the country. I wish, wish, wish we all lived within 10 miles of each other.

Thank God for friends who are willing to help me. Relatives who ARE friends. And other friends. My "old" high school friend (who is younger than I am) is taking Jacob while we're gone. What a blessing.

So please just continue to pray for my family...my sister who is having her gallbladder out doesn't have insurance until April 1st, so they have to pay for everything. She's selling candy bars and making cans to bring to local businesses...Going to ask her church to do a bake sale to help pay for expenses. Surgery isn't cheap. Doug will be taking a box of candy bars to work!

Anyway. Trying to just let the Lord deal with it all, because He knows I can't! My shoulders are wide, but not that wide. And since I have the priviledge to cast my cares at the feet of the One who parted the Red Sea? The One who stopped the sun in the sky? The One who spoke the Universe into existence? Why wouldn't I??

Comfort Cross Giveaway

I just received this Comfort Cross to review, and it is beautiful. I start my Rituxan treatments on Wednesday, and was so pleased to receive this before I go. Not like I want it to be an idol or anything, but knowing that it came from Bethlehem, from a genuine olive tree, from the city of Jesus' birth...It immediately became very special to me.

Comfort Cross supports Christian craftsman in Bethlehem who carve these crosses to provide for their families.

I cannot tell you how thrilled I was when I got this. It fits perfectly in my hand, and I can see how this could be used as a reminder to pray for someone, to comfort a child and remind them that God is always with them. There really was a sense of peace that came over me when I held this cross. This card comes with it, in a beautiful burgundy pouch.

If you would like one of these wonderful crosses, all you need to do is leave me a comment telling me if you would keep this cross for yourself or give it to someone you care about. The makers of the Comfort Cross are giving two lucky readers their very own Comfort Cross! If you would like to purchase a cross for you or a loved one, you can go to the Comfort Cross website and order them. They have special deals for fundraising for churches, and deals on ordering more than one.

Two winners will be drawn randomly by Random.org on Friday, March 25th at 5:00 PM EST. I will post the winners on my blog and contact the individuals for their mailing information.

Roller Coaster

Why can't I just get my emotions and heart and all that crap lined up with my mind? My brain tells me everything is going to be okay, and then my emotions crop up. So I tell them where to go. They don't listen.

I have been just fine regarding my upcoming treatment. I even talked to an MG friend who has had it, and I felt even better about it. I was feeling strong health-wise, but my sister has been in agony with gallstones and an ulcer. (Not because of me...that's a whole separate issue). Now I'm getting pooped again (but I had like 4 or 5 REALLY good days, so I'm not complaining....it just reinforces my thoughts on the Rituxan).

Then today I get on facebook and see that my sister is in Emergency again (she was there last Sunday) and is probably getting her gallbladder out. Her daughter, my niece, was going to come here Tuesday to stay overnight, but I want her to stay with my sister now...even if she doesn't have her gallbladder out....she'll need help.

I just have to calm down. God will work it out. As I so eloquently said to a friend (speaking to her, but this time to myself): "God didn't bring me this far to drop me on my butt!"
I just really need your prayers.
Thanks.

An Old Post That Fits Like A Glove

Tuesday, September 23, 2008

Busy, busy, busy

Ya know, I can't believe how much people take on. It's like the busiest, most exhausted person wins! But wins what? Lost relationships? An ulcer? No sleep? I have to admit, I use to be a busy person. My illness slowed me way, way, WAY down. TOO "way down" if you ask me. But it really makes me treasure what's important. I guess if there's one thing I'm thankful for by having a chronic illness is that I try not to take important things for granted. I ask myself.... Will this matter 10 years from now? It may matter an HOUR from now, but does it have ANY lasting value? If something is important enough, you WILL find time for it.

Here's a big shocker, folks, hope you're sitting down. It's not a competition. If you get everything done on your list of 17 things to do today, but had no contact with a true friend, or helped no one, or didn't pass on a kindness to a stranger, then did today really matter? I KNOW I can't be the only person on the planet who genuinely cares about people, and will make time for what's really important. But that's the key. You have to MAKE time. My theory is, if it's important enough, you'll find time for it. You find time to watch your favorite program. You find time to eat dinner. You find time to go shopping. You find time to read a good book. You find time to ______. And I'm still preaching to the choir, because there are many times that I could spend with God, that I choose to do something else...watch TV, read, etc. We just have to prioritize.

Some folks genuinely have busy lives because they ARE taking care of others; a sick friend, an elderly parent, a down-on-their-luck neighbor. And bravo to you. But don't forget that even doing all these "Good Things" you can still be too busy.

In our world of immediate gratification, it is an important lesson to learn to slow down. I have had to by force. But it really has made me step back and see that so many of us are, or were, just like crazy little ants running around and going and going and going.....

So please. Take a minute to stop today. Stop and spend a few minutes in complete silence. Stop and spend a moment in prayer. Stop and drop a card in the mail for a friend, or a shut-in at church. Stop, and ask your pastor what you can do to help.

We area all in this so called life together, and we all need each other, whether you want to admit it or not.

Hope

If you've been reading my blog for any amount of time you know that I am a "Hope Junkie". I cannot, no, WILL not live without hope. I am an eternal optimist. I was in a negative rut for a while, and it was SO not me. But when people started really stepping up to the plate to help me, my faith in humanity had been renewed, and I've been getting stronger ever since.

When I ended up in the hospital in myasthenic crisis on December 17, I knew I had some reckoning to do. I had to slow down. I had to deal with reality. I had to understand that the disease had me, I didn't have it. And that needed to change. Quickly.

So thanks be to the Lord, Who moved hearts, who then acted on that provocation, which in turn instilled back in me my Hope. And there's no stoppin' me now.

I read a blog once that absolutely broke my heart. A young woman was explaining her belief system, in which she felt that as long as you had a belief in some greater power, that was what was important, not WHAT or WHOM that greater power was. And many agreed with her. So many think that Christians are narrow-minded, self-righteous halfwits who believe in some great magician in the sky. And that "hurts my heart" as Jacob would say.

How do people who don't believe in God live through life's challenges? How do they make it through death or disease? Heartbreak? Loss? I can't imagine going through life thinking this is all there is.

I know that there is One Way. And I know this because the God of the Universe said so. And that, for me, is enough. I don't need scientific proof that I didn't emanate from some ooze, or that this magnificent, beautiful planet began by what amounts to spontaneous combustion (although there is plenty of scientific and historical proof to support the Bible). II Timothy 3:16 says "All Scripture is given by inspiration of God, and is profitable for doctrine, for reproof, for correction, for instruction in righteousness."

So there you have it. My personal belief. If it's offensive, then it is the Word of God that offends, not me. I don't judge others for what they believe because it is their choice. God gave us all free will, and He's not going to shove Himself down anyone's throat.

But you know what I was thinking yesterday? How sad I would be if Jacob went through every day with me right here by his side, and never talked to me or acknowledged me. It would break my heart. And then I thought, here I am, with God right beside me, going through every moment with me, and He feels the same way I would! Even more so because His love is so much greater than my own.

Deep thoughts today, I suppose. But that blog post just struck a chord in me and really made me thankful that I believe. That I know the Truth. And that He knows me.

Random Letters

Dear Boxelder Bugs,

You are hideous and I hate you! You don't seem to annoy anyone in the house but me. I do not want you near me! Do not crawl on me, do a "fly-by" my face, or land on my table. Go away! You're a bug. You're supposed to live OUTSIDE and do buggy things. And since you live on almost every flippin' tree within one square mile of my house, you have PLENTY to choose from. If you MUST stay, know that this. means. war. My dogs love to eat you, and I will do everything in my power to knock you on the floor so they can devour you (insert evil laugh).

Sincerely,
Boxelder Bug Battler



Dear Rituxan Infusion Scheduler,

Thank you for getting me in so quickly. But 8 AM? Seriously? We live 3 hours away! Because I am confident that this medication will put me into remission, I'll let it go, this time.

Sincerely,
Not An Early Riser


Dear Mailman,

Could you bring me something other than catalogs I don't want and junk mail? I love getting the mail. Moreso than the average bear. It's kind of a weird thing, I suppose...like my office supply addiction. But that's another story. Anyway. A nice package or letter or card would be awesome. See what you can do. Thanks.

Sincerely,
Snail Mail Junkie


Dear Charities That Send Cash or Checks In Your Plea For Money,

I will NOT send you money on principle. I won't even send your check back. Once I even cashed it because you make me so angry. If you send out 1 million letters with a $2.00 check in each envelope, and everyone cashed them (since they are made out to the person you send it to), you would be out TWO MILLION DOLLARS. Why don't you spare yourselves the time and money of sending all that out when you could just spend the TWO MILLION on your cause? Am I the only one who thinks this is ridiculous?

Even if you send a nickel. I'm sure you send it to at least a million people. Probably many more, but we'll just go with a million. That's $50,000.00. And when you send out 4 pleas a year, you're up to $200,000! Do you KNOW how many people you can feed for $200,000? You are so agitating and illogical. You make me CRAZY. AND, you won't get a nickel from me. Not even the one you sent me.

Sincerely,
Generous To People With BRAINS

Guest Post-What Not To Wear

What Not to Wear - My Favorite Fashion Show on TV

Written by Shannon Tillman

One of my favorite fashion shows on TV that I got after reading over this Directv HD Offers comparison is What Not to Wear. Stacy London and Clinton Kelly surprise people who have been turned in by their friends and family for having terrible style. The guest is given five thousand dollars on a credit card that they can use to purchase a whole new wardrobe while shopping in New York City. Stacy and Clinton are very funny in their interactions, and they throw all of the guest's clothing away. The first day of shopping, the shopping challenged person goes on their own with a camera crew in tow. On day two, Stacy and Clinton surprise the person and assist them in shopping and spending the rest of their money. After getting new clothes, the person, who usually is a woman, gets a new hair style and their make-up done. They do a final reveal to their family and friends after returning home.

I like this show because it's entertaining and you also learn a lot about fashion while watching it. The hosts give plenty of tips on how to dress for different body types. You also get makeup and hair tips by watching What Not to Wear on satellite TV. Stacy and Clinton play off of each other, and make me laugh out loud at least once per one hour episode. I always look forward to seeing What Not to Wear - it even inspires me to clean out my own clothes closet!

Exciting Update!!

I got a call from Ann Arbor today....I start my Rituxan treatment NEXT Wednesday the 23rd!! I'm a bundle of scared and happy and nervous and excited and relieved and energized. At first I kind of flipped out, then I was excited. Just a lot of emotions ping-ponging through my brain.

The GOOD news is that it is covered by insurance. The BAD news is that it's at the Canton Infusion Center, not the Cancer Infusion Center at the U of M campus (their waiting list was months long). The WORST news is that each infusion (every Wednesday for 4 weeks starting the 23rd) starts at 8 AM. Yes, that's IN THE MORNING.

So instead of getting up at 3:30 in the morning to drive there, we will be heading down overnight Tuesday each time. We have an HSA account to help with finances (of course if there's no money in there it won't do us much good!), but 4 trips to Canton (300 miles round trip, so 1200 miles worth of gas) plus 4 nights at a hotel, meals...BUT....this is it. I know it is. I am CONFIDENT that this treatment will help me, and put me in remission. I have studied several cases of people with MuSK+ MG like me, Class IVb like me, refractory MG like me, and all of them improved, and half went into complete remission. SO. Take THAT MG MONSTER.

I do, as usual, ask for your prayers. My niece is coming to stay with Jacob the first time, and we have other arrangements made for Jacob for the other 3 times. We just ask that you pray that everyone involved stays HEALTHY first and foremost. We ask for prayers to BLESS the people who are helping us. We ask for prayers for enough money to cover our expenses. We KNOW that God will provide everything we need...above and beyond our expectation.

I'm sure I will be posting more about it as the week goes on....because it will be foremost on my mind! Thank you all for supporting me and my family through your thoughts, prayers and actions. We love you dearly!!!

Suffering

I am doing a series of Bible studies on suffering by Rosemary Bardsley. I basically did a search and came upon these studies. There are 12 of them all together, and I'm only on number 2, and already have been profoundly affected.

I think the thing that struck me the most (and oddly, something I already knew), is her words about suffering being an ABNORMAL part of the world. Now, when I say I knew this, I mean in the sense that suffering exists because we live in a fallen world, etc.

But the author goes into DETAIL about this. For example, in the normal world, everything God created was "very good." In the normal world, because humans were made in God's image, they reflected his "character and glory." In the normal world, work was a blessing, marriage was fulfilling and satisfying, there was no killing (this was before animal sacrifice for sin, before Cain killed Able, even before men killed animals to eat). In the normal world, there was no shame.

From What People Say About Suffering, by Rosemary Bardsley:

"Our Sovereign God created a world that was very good, in which the words "sickness" and "suffering" and "poverty" had no meaning, because there was none.... At that point sin, and along with it, suffering, entered the world. That suffering is here because of sin is obvious. Why God, who is powerful, good and loving, permitted sin, is not so obvious. But it is obvious in the Bible that the present condition of the world...is not the way God created it to be, and is not the way it will be. We live in a time that is "in between"-neither the original or the eventual.... [Suffering] has no permanent right to be here. It has no ultimate power or authority. It is not greater than the Owner of the world, nor can it turn Him aside from His purpose. Indeed, so great is the gulf between His power and its power that He takes it in His hands and makes use of it in His eternal plans."

Mmm-Hmmm! Can I get an AMEN!! God takes suffering in His hands and makes use of it in His eternal plans. Do you know what that means? Because I suffer, I am part of God's eternal plan. Because YOU suffer, YOU are part of God's eternal plan.

What could be more important than that??? Those who suffer are being used for eternity. This, this life, this world that we populate, that we "live" in, for now....it's NOTHING. It's a fleeting moment in the grand scheme of things. It's not the original created perfect world, nor is it the world that will be when Christ returns.

We are truly waiting....but while we wait, let's DO something. Let's ALLOW God to use our suffering for eternity. Let's ALLOW ourselves to be instruments that play music that may be the only harmony some people ever hear.

Friday Field Trip

Friday I still was feeling good, and my hubby decided to take the afternoon off work, and we went out for lunch and to the Frederik Meijer Gardens in Grand Rapids. They have butterflies from all over the world there once a year. Every year I'm like, I want to go see the butterflies! But I have never felt good enough. It's very humid and warm in the gardens where the butterflies are, and humidity is BAD for MG. But at the beginning of the year, my resolve (not resolution) was to LIVE. So we went. I was a good girl and brought my walker, which I used the entire time. Here are some pictures of our beautiful day.


It was SO gorgeous in the gardens. The sky was blue and the sun was shining....


They seemed to like my shirt.


They had these little feeders all over the place.

One of my favorites...this little guy landed right on the bright green fern. So pretty!

They had some amazing cacti there!

This is probably my favorite of all.

This was the first butterfly we saw there!

My dad had cactus in his greenhouse while I was growing up. I never saw this kind of cactus SO big!

Amazing orchids. The flowers there are stunning as well.

True Love

This story is so close to my heart. When Doug and I had been married only 6 weeks, I went into the hospital, and no one knew if I would live. Nor did they know if I did live what quality of life would be possible for me. Doug stuck by me. He could have just said, "I didn't sign up for this." But he is a man of integrity. He is a man who honored his vows, for better or worse, in sickness and in health.

Today many people view marriage like a paper plate. Disposable. Can always get more when you're done with this one. If it doesn't work, just throw it away. If it's not quite the quality you expected, just dump it. Doesn't cost much.

That's the problem. To many people, marriage doesn't cost much. It should. It should cost all you have. Did you know that 75% of marriages where one partner is chronically ill end in divorce? Three out of four. Please read the words of Chris's song.

And please live them. Say what you mean, and MEAN WHAT YOU SAY.

What Are Words by Chris Medina

Anywhere you are, I am near
Anywhere you go, I'll be there
Anytime you whisper my name, you'll see
How every single promise I'll keep
Cuz what kind of guy would I be
If I was to leave when you need me most

What are words
If you really don't mean them
When you say them
What are words
If they're only for good times
Then they don't
When it's love
Yeah, you say them out loud
Those words they never go away
They live on, even when we're gone

And I know an angel would say
Just from me and now know I'm meant
To be where I am and I'm gonna be
Standing right beside her tonight
And I'm gonna be by your side
I would never leave when she needs me most

What are words
If you really don't mean them
When you say them
What are words
If they're only for good times
Then they don't
When it's love
Yeah, you say them out loud
Those words, They never go away
They live on, even when we're gone

Anywhere you are, I am near
Anywhere you go, I'll be there
And I'm gonna be here forever more
Every single promise I'll keep
Cuz what kind of guy would I be
If I was to leave when you need me most

I'm forever keeping my angel close

Book Review: Illegals by Darrell Ankarlo

In Illegals, The Unacceptable Cost Of America’s Failure To Control Its Borders, Darrell Ankarlo didn’t just complain about illegal immigration, he became a part of it. The author braves illegal border crossings to get a real handle on the issue of illegal immigration from Mexico to the United States and back. Illegal immigration is such a hot button issue, and the author really wanted to expose it for what it is: dangerous. Not only do illegals risk their lives due to climate, but some are drug mules who die from drug balloons bursting inside them.

I was surprised at the compassion I felt for some of the situations of the people trying to get into America. I have no problem with immigration; I have a very big problem with illegal immigration. That hasn’t changed. I found myself understanding perhaps a bit more about why so many people are willing to risk their lives to enter our country. This country needs to step up its immigration laws and procedures, to be sure. But the immigrants are certainly not the only ones to blame. Many people will hire illegal migrant workers because they work so hard and for such little money. That does NOT help the problem.

I recommend this book. It will give you a different perspective regardless of on what side of the fence you stand.

Disclosure of Material Connection: I received this book free from Thomas Nelson Publishers as part of their BookSneeze.com book review bloggers program. I was not required to write a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission's 16 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising."

Get Life Insurance While You Can

One thing that really stinks about having chronic illness is that NO ONE will give me life insurance. About 6 years ago, Doug and I looked into getting life insurance. You have to fill out a ton of paperwork, and a nurse comes to your house to do a physical. Doug ended up getting the primo package, cheapest rate, all that good stuff because he is so healthy (Thank God).

I, on the other hand, couldn't get ANY life insurance. Which if you ask me, makes NO sense, because why do healthy people need life insurance? Anyway, there are two main types of life insurance, term life insurance, and whole life insurance. Whole life insurance gives you options of borrowing against your policy, but the premiums are usually higher than term life.

So what is term life insurance? These policies are for a specific period of time, say 10, 20, or 30 years. The good thing about term life insurance is that the premiums are usually fairly inexpensive. The bad thing is that once the term you've chosen is up, you get no benefits. So if you've paid life insurance premiums for 20 years and you never used the life insurance, you're out 20 years' worth of premiums. You can get a quote for life insurance, or just learn more about it at Spectrum Insurance Group. Their website is really easy to use, or there is a phone number you can call.

Regardless of what type of life insurance you choose, I HIGHLY recommend getting it, no matter how young or healthy you may be. Because by the time you have anything wrong with you, you either won't be able to get coverage at all, or it will cost you hundreds of dollars a month for minimal coverage. I speak from experience!

RepairPal...Awesome Website!

Hey all,

I came across THE coolest website! It's called RepairPal. This site has everything you could ever need or want to know about cars. It's got features like how to find a car repair shop anywhere in the country, how to get an estimate on almost any repair to your car, or you could even get instructions on how to fix something yourself! It's amazing!

For example, say you're in L.A. and your car breaks down. You could go to RepairPal and go to the Directory. Enter the city you're in (Los Angeles), and you'll get places in Los Angeles for auto repair! You can find out a little about L.A. while you're at it.

Another awesome feature is the Car Info. Say you want to buy a 2001 Honda Civic. First, though, you want to find out a little bit more about that particular vehicle. So you go to RepairPal, go to Car Info, and type in the year, make and model of the car to get your information. You can get customer ratings, recalls, problem reports and there's even a Q&A. This is seriously a cool website.

One more thing that I think is fabulous is the how-to information you can get from the Encyclopedia. Say you want to know about how to repair a head gasket, to see if you can do it yourself instead of finding a repair shop. Go to the Encyclopedia tab, then select the system and/or part you need to fix. It gives you so much information!

I couldn't help but think of women who go to either buy cars or go to a repair shop to get a car fixed. Whether you're single or married, if a woman goes alone to a car lot or a repair shop, unfortunately, they can be perceived as not as knowledgeable about vehicles. If you went to RepairPal, you could get all the information on what you need, and make sure you're not getting ripped off!

You really need to check this out. It's one of the most informative sites I've seen in a while.

Drumroll Please......

I FEEL GOOD!!!

Two days in a row now....I don't feel like I could just crawl in bed and stay there for a month. It looks like this pheresis worked! I am so FLIPPIN' happy I could bawl. (I could bawl pretty much anytime, but, ya know...)

I even got dressed. Now THAT says something! Normally it's PJ day unless someone is coming over. Not today! Bra and everything. Go me!!!

So I got a call from Ann Arbor, and things are IN THE WORKS for the Rituxan treatments. I need to get some bloodwork done, and except for waiting for a spot to open up (cancer patients get priority which I totally get), we will be good. to. go. Woot Woot!

When I'm better, ya know the first thing I'm gonna do? I'm gonna DANCE. I'm gonna shake some bootay. I may only be able to dance for 5 minutes, but for that 5 minutes, I'm gonna BOOGIE!

I also got my printed blog-book in the mail, and I freakin' LOVE IT! No, it's not perfect, because there are typos here and there on different blog posts, but whatever! It's me in print, and I LOVE it.

So. That's about it for me right now...I'll keep ya posted!

Chicken and Dumpling Recipe

Okay, chicken and dumplings....the important part is the dumpling recipe, because they are AMAZING.

2 cups flour
2 tsp baking powder
2 Tbsp melted butter
3/4 milk
1 tsp salt
1/4 dried herbs (I use parsley and chopped chives)

WARNING: THE REST OF THIS MAY MAKE ABSOLUTELY NO SENSE, BUT I WILL TRY TO EXPLAIN HOW I MAKE IT.

The BEST way is to roast a whole chicken first. Like make that one day for dinner, and then save the leftover chicken and pan drippings, juice, cooking liquids, gravy, all that good stuff, (This is NOT a low-fat meal!!) because all of that good stuff becomes the base.

Then I chop up probably 6 or 7 carrots and 6 or 7 good size celery stalks, and add them to the chicken base. Use a big pot on the stove top or your crockpot; obviously the crockpot takes longer. Then I add 2 cans of Campbell's cream of chicken soup. If you don't have enough liquid from leftovers, add some milk or chicken stock. Cook all this til the vegetables are done how you like them. Then use about 1/4 cup of cornstarch, mixed with water, to thicken it up a bit. Then, at the very end, add a good cup of sour cream. Stir that until it's really well mixed in.

Pour all this into a 9x13 pan. Then make your dumplings (see recipe above) and drop them in little globs all over the top of the chicken stuff. Bake at 350 until the dumplings are golden brown on the top. They will NOT be soggy, and will be cooked all the way through. Yum!!

IF I had to make it totally from scratch, I would use skinless, bone IN chicken for flavor (use whatever spices you normally use to cook chicken: poultry seasoning, sage, garlic, onion, salt, pepper), then boil the bones to get all the flavor out, strain it, etc.

To me it's just easier to make a roast chicken and use the leftovers!

Anywho. I digress.

But again, if I didn't have leftovers, I would probably use a jar of chicken gravy, a couple of cans of chicken stock, and I use 2 cans of cream of chicken (or you could use 1 cream of chicken, 1 cream of celery), carrots, celery and cook it til the veggies are done to your liking.

After that everything else is the same....the corn starch water, sour cream, etc. I told you this would be confusing!!! But it is SO SO SO yummy!! I had my sister and her husband and son over for dinner, plus Doug and I, and I made TWO 9x13 pans, and there was NOTHING left over. The guys went CRAZY over it.

If any of you try it, let me know how it turns out!!

The ABC's of Me

I totally stole this from Blue & White....she's on my Blog BFF list if you want to check it out!

Age: 40 (AAhhhhh!!)


Bed size: queen


Chore you dislike: Well, I can't do many, but when I was a "normal" woman, I hated cleaning the bottom of the toilet.


Dogs: Three: Molly, a beagle/sheltie mix, age 11; Moose, a mutt of some sort of retriver/pointer/border collie/Aus. sheperd age 5, and Blackie, our black lab/great dane mix, age 1~!

Essential start to your day: COFFEE!!


Favorite color: Purple of course!


Gold or silver: Both


Height: 5’4"


Instruments you play(ed): Flute, piano

Job title: Domestic engineer, CEO of my house, professional medical patient, oh yeah, WRITER!

Kids: One perfect son.


Live: in Michigan. WILL live in Colorado someday.

Mom’s name: Karen


Nicknames: Don't really have one. Sweet Pea (hubby). When I was little I had 2: Blood and Guts (I guess I was a tomboy) and Keek

Overnight hospital stays: Yes. Many.


Pet peeve: People who treat you like an idiot when you KNOW you know more than they do, like insurance billers.

Quote from a movie: "Are you crying? There's no crying! There's no crying in baseball!" (A League of Their Own)

Righty or Lefty: Righty


Siblings: I had 4. My sister Michelle was killed in a car wreck when I was 16, she was 18. I have two older sisters and an older brother in California. Yes, I'm the baby. : )


Time you wake up: Whenever Jacob does, once in a while before

Underwear: I don't understand the question. : ) Yes?


Vegetables you don’t like: brussel sprouts, any kind of hot pepper (which is anything but green bell pepper) cauliflower, mushrooms ewwwwww


What makes you run late: Well, I never run, so I don't think this pertains to me. : )


X-Rays you’ve had: Um, other than dental, I've had a bunch of chest x-rays to see if my lungs were open or not, my ribs, feet, shoulder, brain if you count CT's and MRI's, hips, spine, a lot.


Yummy food you make: Chicken and dumplings. Best you've ever had, Guaranteed.

Disclaimer: there is no Z. I’m bummed.

Hope you all have a wonderful day!!!

Yesterday

First of all, the plasmapheresis treatment went smoothly. Hallelujah! I was a teeny bit nervous because it's been a while, and I always have a bit of anxiety. You'd think I'd be used to having this stupid treatments seeing as how I've had a brazillion. But the needles went in perfectly, didn't even FEEL one of them...which is amazing. Ran smoothly, and got outta there in about an hour and 15 minutes.

Then we went to see Dr. Teener in the EMG lab after the treatment. I really had wanted to see him BEFORE the treatment, because I was so wiped out afterwards....I felt like my brain was all fuzzy and I wanted to be thinking very clearly.

We talked about the Rituximab, and we (the doc, me and Doug) all seemed to be on the same page. The possibility of PML is really remote. The biggest concern is actually pneumonia! They usually give patients who get Rituximab Dapsone, which is a low grade antibiotic with a sulfa base to protect from that. Now Dr. Teener knows I'm allergic to sulfa, so he says, "You'll probably get a warning from the pharmacist but... " So before he continues I say, "My sulfa allergy leads to anaphylactic shock." He just closed his eyes. I'm like, "Yup, I took one pill, and 3 hours later they were stabbing me with epinephrine! Does that REALLY surprise you?" My case is the 2nd most difficult case of MG he's ever had....I wonder if I'm starting to move up in rank!

Anyway. Now we are waiting on a call from the neuro for a date for my first infusion. I will have one treatment a week for 4 weeks, then hopefully one treatment every 6 months. Many people start feeling better after the first month. Some it takes a bit longer. I get to cut my CellCept in half the week before my first treatment, and the prednisone goes down to 5 every day 2 days before. This is to reduce the risk of pneumonia (a little). And if I get pneumonia, they will aggressively treat it right away, and I'll be fine.

SO. No more pills to try, no more "band aids" as a friend of mine put it. Time to pull the trigger. I'm ready. I'm scared, but I'm really ready. I asked God to make it VERY clear to me (sometimes I need a good 2 x 4 over the head to "hear" Him) if I was NOT to go through with this. Got no such thing, so I'm going. Kind of like with the cyclosporine, I KNEW it wasn't going to work. I hung on longer than I should have because several people wanted me to, but I KNEW that I KNEW it wasn't the right thing.

Rituximab is my shot at remission folks. Might be a month, 6 months, a year, I don't know. But remission. Here's hoping!!

New Look and Other Fun Stuff

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

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

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

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

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

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

4) MORE NUDITY

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

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

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

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

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

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

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

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

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