Exciting News

My dream is to be healthy enough to go to churches and organizations about and speak about chronic illness and how to take care of one another. I think some people don't understand the importance of physical and emotion support for the chronically ill.

Well, Pastor Chad from Allegan Bible Church stopped to see me yesterday, and we talked about some wonderful opportunities. He mentioned that part of the problem is that some folks don't understand that they have gifts that are essential to chronically ill people, but they don't see them as important.

For example, he had a woman come up to him and say, "I'd love to help, but I don't know how. All I really know how to do is clean." I was like, THAT IS HUGE!!! There are SO many things that SHOULD be done in my house every day. Cleaning machines, tubing, filters, vacuuming, etc. I'm allergic to dust. With a hole in my neck with no filter to my lungs, there's a lot that should be done that just doesn't get done to protect my airway. There's just not enough energy.

Think about what you love to do. Or what you're good at doing. Some people seriously have a gift for cleaning. So donate some time to someone in need. Do you like to cook? Make some extra when you're making a meal. Throw it in the freezer. Ask your pastor if he knows of anyone in need of a meal. You don't have to walk on water or have a ton of money to help someone.

And face it, if it comes down to taking care of my son or cleaning all of the filters on my machines, Jacob gets priority. It's all about balance. It's all about how much change I wake up with in my pocket, and how much I can handle.

Anyway....the exciting news. Pastor Chad is going to facilitate a video of me, getting my message out, and put it on his church's website. We are hoping and praying that it will also be on Love INC's website, since they are national. That way, I WILL be able to get my message out from my own home! Plus, the man coming to do the video is going to show me how to do it myself.
YAY!

I'll keep you posted!

Prayer For Folks In The South

Hey everyone,

I just wanted to ask for prayers for all of those affected by the horrible tornadoes that ripped through the south last night. I have a wonderful friend who lives very close to Tuscaloosa, Alabama, and the damage is devastating. She is okay, thank God...

The death toll is officially 194 just from this area, and many, many are missing. That's what breaks my heart. It's bad enough that people are suffering such devastating loss; life, property, everything they hold dear. But to not know. To me, that would be the worst. Please keep them in your prayers, and pray that the lost may be found.

Thanks.

IdentityHawk: ID Theft Protection

Identity theft is a HUGE problem today. I know people personally who have had problems with it. I haven't had my identity stolen (who would want to be me anyway?) but I've had fraudulent charges on my credit card. With the internet, everything seems to be connected, and that includes a lot of your private information.

IdentityHawk offers several options for protecting yourself. It can help you assess your risk of being a victim of identity theft, as well as offering identity theft protection. For example, you can have IdentityHawk send you a text or e-mail if any suspicious activity is detected.

IdentityHawk sorts through literally billions of records to find out if any of your personal information is where it shouldn't be. You can never be too careful. Checking your credit report is a good first step to monitoring financial transactions, but if you want to be completely covered, you should opt for an identity theft protection program.


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Just One More Aspect of Chronic Illness

I purposely didn't post yesterday because I was in such a foul mood, and was afraid I would be posting way too many $%%$##@#! kind of words. So I refrained. : )

I have been going back and forth with the U of M over a bill for $20.86. From December 21 of last year. It would be SO much easier to just send them the stinkin' money and be done with it. But it's the principle of the thing! I can't take it. I can't just give in. Besides, if I did that every time it would add up!

So back and forth we go. They have the wrong secondary insurance. Medicare is my primary because I'm on disability. (Believe me, I'd MUCH rather be working!) and Priority is my secondary. They still have Blue Cross as my secondary; well, let me clarify. The U of M HOSPITAL billing has everything straight. The PHYSICIAN billing (which looks exactly the same bill-wise), still has is messed up. So I call Medicare (oh, what joy) and they say they need a letter from BSBC of termination of benefits so they can change it "in their system."

And HOW is this all my job? Aren't the insurance companies supposed to communicate? O, silly me...what was I thinking? That would require INTELLIGENCE and a little WORK. Heaven forbid.

So I do what they say, and it still is messed up. So I call Blue Cross again, and this time get someone who knows what they're doing {cue Hallelujah chorus} and tells me exactly what to say to Medicare to get it fixed. Because apparently at the U of M physician billing, Medicare is billed first and then sends it on to the secondary, which they still had as BCBS....just for U of M apparently.

Rabbit trail: Why the heck does everything have to billed separately anyway?? When I have plasmapheresis, a neurologist comes to my bedside (when I have the needles already in so I can't talk anyway), asks me 3 or 4 questions that take about 90 seconds, walks away, and charges $205.00. Yes, $205.00 for 90 seconds. No wonder insurance is such a nightmare!

Anyway. So I'm billed separately for their highway robbery visit. Nice.

Thankfully, the ladies at City Hall (my hubby works for the City) are willing to help me with this, because there comes a point where I'm just ready to lose it. So I e-mail the girls, and they e-mail back saying U of M is telling THEM I have a zero balance. {imagine me pulling my hair out running around the house screaming, which I can't do, but I would if I could}. So I call this morning, and I have a $20.86 balance. Someone just shoot me.

And we're supposed to have this "Employee Benefit Solutions" person to deal with all this, who has "been in this business for 20 years." However, I know more about his job than HE does! Needless to say, I don't bother with him.

NOW U of M says I need an "authorization of service" from my PCP. I'm like, you mean a referral? No. That would be too easy. "It's a little different. You need an authorization of service for that day." {more screaming and pulling of hair, maybe some poking of the eyes with sharp objects}.

So I call the PCP and they have NO IDEA what I'm talking about.

And of course, I have NOTHING better to do than spend what little energy I have dealing with all this bull$#!!.

{Sigh.}

Feeling A Bit Better!!!

I am feeling a bit better than yesterday. Well, A LOT better than yesterday....Yesterday was pretty rough. I'm hoping and praying that this is the beginning of a long upswing.

One thing that is so difficult is the constancy of this disease. It doesn't go away for Easter. It doesn't stop when you get a migraine. It's still there when you get sick (like a normal "sickness" like a cold, for example). My MG never takes a break. Never leaves me alone. It's always there.

Germs aren't just germs; they're deadly microorganisms for the chronically ill.

Staircases aren't just staircases; they are, at times, insurmountable obstacles.

Hospitals aren't just buildings; they are the stuff of life and death. Of dreams and nightmares. Of cures and killers.

Imagine carrying a 50 pound backpack with you every moment of every hour of every day. You might be okay for an hour, a day, maybe even a week if you're strong and in good shape. But try a month. A decade.

It gets in the way of everything. Just think about it. It's not like you can't live with it, but it just changes everything. That's the life of people with chronic illness.

Today

Do you know what today is?

Today is the day a mother went to grieve her son at his tomb, only to find it empty.

Today is the day that people finally believed in a Savior.

Today is the day that gives me the hope to live each day.

Today, we celebrate Jesus Christ and His victory over death. Today, we serve a Risen Savior!

This was my favorite hymn when I was little. It is written by Robert Wadsworth Lowry.

Low in the grave He lay, Jesus my Savior,

Waiting the coming day, Jesus my Lord!

Up from the grave He arose,

With a mighty triumph over His foes,

He arose a Victor from the dark domain,

And He lives forever, with His saints to reign.

He arose! He arose!

Hallelujah! Christ arose!

Vainly they watch His bed, Jesus my Savior;

Vainly they seal the dead, Jesus my Lord!

Up from the grave He arose,

With a mighty triumph over His foes,

He arose a Victor from the dark domain,

And He lives forever, with His saints to reign.

He arose! He arose! Hallelujah! Christ arose!

Death cannot keep its Prey, Jesus my Savior;

He tore the bars away, Jesus my Lord!

Up from the grave He arose,

With a mighty triumph over His foes,

He arose a Victor from the dark domain,

And He lives forever, with His saints to reign.

He arose! He arose!

Hallelujah! Christ arose!

Pheresis From Hell (Long)

OH good grief. This is exactly what I felt like on Friday when I saw the "new" pheresis tech. My appt. time was 1:00. We were there at 1. She was there at one. We'll just call her Pokey (more relevance than just being slow). She fiddled with the pheresis machine for AN HOUR before she even started moving it into my room, in s-l-o-w m-o-t-i-o-n. Good heavens. Talk about molasses in January.

This was doing NOTHING for my confidence. I honestly don't think this child EVER had done pheresis peripherally in her young life. Not that age always means experience and vice versa. But in this case, OH yes. I was almost shaking by the time she started getting ready to start the actual treatment.

First, she scrubbed my anticube veins for like 30 seconds with betadine. I'm like, Helllllooooo have you ever heard of an alcohol wipe????? Then walk down the hall to throw it away. Then get new gloves on. Then scrub the other one for 30 seconds (she was actually looking at her watch). Then walk down the hall, throw it away (I'm like, you got something against a garbage can in here or somethin'??) Then down the hall to get new gloves. Here's an idea, GRAB MORE THAN ONE PAIR IF YOU'RE GOING TO TAKE THEM OFF EVERY 2 SECONDS!

Then the blood pressure cuff. They always do it on my lower arm, because if they use the automated ones, they always blow up WAY too tight and it hurts like hell and I get a ring of bruises around my arm. So she put the cuff on the top, of course, and walked away. If puffed up, my eyes are bulging out of my head and my hand is purple, but it finally stops and starts to de-puff. (Yes, that IS a word). But then it starts puffing up again.

I just yelled "Would someone get this thing OFF me??? It's killing me!!!" Well, THAT actually got her moving quickly! Ug. So she moves it to the bottom and it was like 145 over 85. I said, "That's it? I thought it would be like 200 over 140 by now!" Went over her head.

I should have known. First stick on my return arm. Holy $h!t. PAIN. In spades. Then she's moving it in and out like she'll magically hit a spot if she "jimmies" it around. Problem is, that's a razor sharp fork tong you're "jimmying" in there. Then she's poking the vein around it, so the pain goes from a 9 1/2 to a 12 and I yelled "Get it OUT! You're on a nerve!" So she takes it out.

(I do think I managed a normal-decibel voice once or twice before the poking began). So return arm, second poke, good to go. She takes blood first, which I'm amazed she remembered. Starts running saline, and it stings, but it's bearable, so I'm not ABOUT to say anything.

My draw arm has a huge vein. It's a little crooked, but Helen Keller could find it. Well, Helen she was NOT. I don't know WHAT she did, but this poke actually made me CRY. Usually it's just gritting teeth, squeezing Doug's hand praying, and going to my happy place. This was some of the worst pain I've ever felt. I don't know what she did. I'm in agony. Can't sob or yell now because I have a 1/2 inch needle in my other arm. So I lay there crying. Like back-arched-off- the-bed-pain. So many thoughts going through my head....I'll spare you the deep, philosophical ones and just tell you that if I ever see Pokey again, something is going to snap. And it's not gonna be me. : )

So it ran faster than Wednesday, purely by the grace of God, after she FINALLY got started. We were there til 4...should've been done by 2:30. My dear friend Linda was visiting me. She used to be the charge nurse at short stay where I was at St. Mary's and told one of the nurses there to call Michigan Blood and say "Never again." (About Pokey Helen). I was like, that's cool, you saved me a phone call!

So today I feel like I've been run over by a train. I can't hold the phone very long, because my veins are so bruised it hurts like heck to fold my arm up.

So that was my Good Friday. How was yours??

No Bull?

Well, yesterday's treatment was pretty horrible, so we're just going to go to the funny part of the day.

We got a cow named Chuck. (So yes, when he lays down he is Ground Chuck). Well. He is supposed to be a steer. I always thought a steer was just a cow with horns. So for the rest of you uneducated city folk (like me!), apparently a girl cow is a heifer. A BOY cow that no longer has his boy parts is a STEER. A boy cow that HAS all of his boys parts is a BULL. Those are the things you see in the PBR-8-second-bull-riding shows. (The BULL not the parts!!!!!)

Well. Our cow has a cough. Yes, a cough. First the $#@$# dogs, and now the cow. WHAT ever. So after another $90 flippin' dollars to combat said cow cough, our loving friend Shawn's son Kyle came over to administer aforementioned $90 medication because 1. it has to be injected, 2. Kyle used to work on a cow farm, 3. Doug had no idea what to do, and 4. Kyle had to help "catch" the thing before he could inject it.

SO. I have to say at this point I am HORRIBLY saddened that I did not see this take place, it is only a vicarious telling. {sigh} I miss ALL the good stuff.

First, when we get home from my horrific treatment, Doug goes out with Jacob to build some kind of cow container. A stall of sorts, quickly assembled. Kyle comes over, Jacob and I are eating supper....never heard a thing.

Doug comes back in after a while, and the first thing out of his mouth is, "Kyle said make sure Jacob NEVER EVER EVER goes by that cow. He said it was rank." Now, I happened to know that "rank" doesn't mean stinky in this case, but MEAN. (I know that from my short-lived fascination with bull-riding).

Then he proceeds to tell me how he got head-butted by the cow, kicked by the cow, and how Kyle narrowly escaped being charged by jumping OVER the cow somehow. (Again, I'm almost weeping that I missed the show). I think Shawn said it was 4 or 5 times that Kyle got pushed around by this "rank steer" who Kyle REALLY thinks is a BULL.

OF COURSE it is. The thing charged the electric fence for crying out loud! And the best part?? We get to do shots for FIVE more days! Today, even if I have to wheel myself to the window, I will be watching. Doug is going to Shawn's to get some gates that they use to box in the animal that needs medication, and then Kyle and his sister Tiffani are coming over. Tiffani will be on her HORSE, and rope the cow's back legs, while Kyle ropes the front, and somehow is going to check to see if his boy parts are still there.

Anyone who has known me for a long time is probably rolling on the floor by now.

So if it IS a bull, we will either bring it back to the auction place and get a REAL steer, or if it's just a rank steer, we will make a small SMALL pen until he calms down. Then we'll just fatten the sucker up as fast as possible and Chuck will be, well, chuck!

One thing to say if you have me in your life in any way: NEVER a dull moment.

Plasmapheresis Number Two Today

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

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

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

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

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

Update on Church and Pheresis

Church was very nice. The people were warm and welcoming. I was a bit bummed because the Pastor had been gone all week to a conference, so the former pastor gave the sermon. However, he was AWESOME. He did a first person message as Simon of Cyrene, the man who was forced to carry Christ's cross.

He warned of the inherent danger in doing such a thing, because, after reading from the Scripture, he said everything coming out of his mouth was just what HE thought Simon might have felt like. It was amazing though. He read of the account from the Gospel of Mark, who referenced Simon's children, Alexander and Rufus. Then he read passages from future NT books that mentioned Alexander and Rufus as members of the church, something that probably came about because of their father's encounter with Christ. It was really cool, and something I'd never heard done before. And something I'll never forget.

We are eager to go back Easter Sunday with Jacob and hear Pastor Dan preach and maybe meet some more people.

On the medical front: the treatment yesterday went FLAWLESSLY. There was a little hang up at the beginning because the nurse couldn't get a blood draw (and I would let her TOUCH any of the spots they use for pheresis...I can just see blowing a vein right before the procedure!). So we had to wait for a phlebotomist (I just love that word) to come up from the lab, and that took about 20 minutes. So by the time we finally got started with pheresis, it was a bit after 2. But then it was lickety split. Two needle pokes, perfect position, start the machine, ran perfectly, done in about 70 minutes. Right up there with a great run from the U of M. {and there was much rejoicing in the land!!}

So now we just pray my veins hold out for Wednesday and Friday, and then see how good I feel for how long before we do three more. It was SUCH an amazing thing, even with the delay today, which shouldn't happen in the future, how FANTASTIC it was to not have that hideous drive, and not take ALL stinkin' day to have this done. Beautiful.

New Church Today

Well, we are FINALLY getting to try a new church today. Not without a huge spiritual battle though...satan does NOT want me to go to this church. But he cannot win, because Greater is He that is in ME than he who is in the world!!!

I have had people praying and praying, and I was up rebuking his butt half the night. Jacob was up like 7 times. He hasn't done that in forever. It was crazy. I was like, I got your number, devil. I told him where to go, how to get there, and to do so in Jesus' name.

I woke up (after finally going back to sleep at like 5:30 AM) at 7, got up, headache, a bit queasy, but I made my coffee, put my "Jesus" music on, and sat down at the computer for 30 minutes, and already people are praying.

I will let you know how it is, because I'm expecting BIG things!

New Doc and Plans

So. I LOVE the new neuro. He's SO nice. He's willing to take on my case and we decided to keep Dr. Teener as my "head" neruo., but we are going to follow-up with Dr. Sullivan. He's warm, kind, professional, and seems to know what he's talking about. Go figure! Also, instead of seeing both an ENT and a pulmonologist, he feels confident that a pulmonologist at St. Mary's will be capable of handling both my trach and lung issues. (Hallelujah for that!) So that means everything except my shrink (who manages my anti-depressants, anxiety and sleeping meds) and PCP will be at St. Mary's. Whoo-to the Hoo! It's so much better having most of my medical stuff in one place.

THEN, Dr. Sullivan suggested having pheresis Monday, Wednesday and Friday, then off for four weeks. Then Monday, Wednesday, Friday, and off for four weeks, and so on. Typically, plasmapheresis is done over a 9 day period, 5 times. Most of the time it's done in-patient, but it can be done out-patient if you have a port, fistula or catheter. I'm pretty sure my veins will hold up for three treatments in one week if they have 4 weeks in between to recover. I'm excited. This doctor seems to get me, and thinks we may be able to tweak my CellCept should this not work. But I think it will.

That, and finally sleeping at night....it's all good!
Oh, and I AM going to check out a new church tomorrow. So if you could just say an extra prayer to bind the devil from giving me a migraine....thanks!

Post Number 600!!

WOW. I am kind of stunned. This is my 600th post. This blog has been such a blessing to me. In MORE than 600 ways, probably, but don't worry, I won't list 600 ANY-things!

But....this is what 600 legos look like.Mmmmm.....600 cupcakes. I'll bet that took forever!


600 chairs, anyone?

This dress is made from 600 recycled m&m peanut wrappers. How cool is that?


How about 600 cell phone charms?
I'm just super thankful and blessed and happy that I have a blog that has maintained 600 posts! I'm sure I've read 600 blogs, met 600 fascinating people, and my prayer is to impact 600 lives (and more!). That might take a while though!

I seriously want to thank everyone who reads this blog and encourages me to continue. It means so much to me that people are actually learning something through me about chronic illness, invisible illness, MG, whatever it may be. I'm just thrilled beyond words that people are listening.

Here's to 600 more!

NOW....how about 600 comments????

YAY

My blog is fixed! Photobucket had some serious issues, and my blog was all messed up. Never fear...I am BACK! Takes more than a technicality to shut me up! : )

So anyway. Today has been busy, busy, busy. I've been feeling so much better since my sister got home from the hospital, but she's still in a lot of pain, and running a fever and stuff. She went to the doctor today (the surgeon) and he gave her an antibiotic, which made ME feel better.

I have been doing a Bible study on suffering, and this week I decided it's the FIRST thing I'm going to do in the morning, and it has made SUCH a difference. This morning I was a liiiiitle grumpy, so I told Jacob Mommy needed to do her Bible study so I could get some patience. I NEVER would have made it through the day without it.

This study is really good. There are like 12 lessons, I think, and I just finished 4. I learn best when I write things out, so I've been taking notes on the lessons, and writing out the verses she references (unless it's a long passage, then I summarize).

Anyway. My poem has gotten some attention it seems! If any of you reading are going to the National Convention for MG, you may hear it read. I will not be there, but someone asked if they could take it to the Nat'l. Convention in May. I was like, OF COURSE!

Then a student in Biomedical Science in the UK asked me if I would be willing to do a diary type entry on her website she has to create for a school project. I am SO EXCITED!!! I went to college to teach children. I learned after I graduated that I liked teaching older kids (I loved middle school, I know, crazy!) Now I'm teaching in a whole different way. It's like, God really is giving me my heart's desire. Just in a TOTALLY different way than I could have expected.

I LOVE to write. That's what I want to do. And because of this illness, I am getting so many opportunities I never would have had. It just reminds me that GOD is in control. And thank goodness. I'm SO thrilled with what's coming down the pike, and it NEVER would have happened had I been healthy. I probably wouldn't have even pursued writing. And it is so important to me.

I have had a tough time the last few years, to be sure. However, things are looking up. Mostly, because I am!

The Sun Does Come Out!

It's been a crazy busy day. But a WONDERFUL crazy busy day. Before 10:00 this morning I did my Bible study, put away the dishes, took a shower, put 2 laundry baskets of clothes away, and sorted laundry.

WHAT???

It was amazing. Then I did my steam and breathing treatments, and Kerry and Karen came over. Oh, how I love Tuesdays!!!

Now Doug is coming home with a cow, (a real one) and then he will do his chores, and we're gonna go out and get a bag of corn for the cow...I think this one is named Chuck. Then grab something for supper.

So this post is short and sweet (ironically, just like me!!) but today was a GREAT day!

Life With MG

The thing that makes me the most crazy about this disease is its unpredictability. I never have liked change. I like structure. Order. Planning. In a perfect world everything would have straight lines, all the labels would line up (alphabetically of course) and everything would always be neat and tidy. I'm like the Type-A anal-retentive with OCD. (Which really should be CDO so it's in alphabetical order!!)

Anywho. Saturday and Sunday were wretched. Simply wretched. Today is SO much better. I attribute that to many things:

1. My sister is home from the hospital and in stable condition.
2. I started the day with Bible study.
3. I've been listening to more music.
4. PEOPLE HAVE BEEN PRAYING FOR ME
5. No migraine

I'm not sure why I let myself stay so discouraged yesterday. Normally I can shake it off. But today has been pretty good. Jacob has been SUCH a good boy today. I feel stronger, and I know it's because people are praying for me....and I can tell. I can't explain it to someone who doesn't believe in God other than to say you walk outside and feel the wind in your face. You can't SEE it, but you feel it so you know it's real. You see its effects all around you.

I feel people's prayers for me today as real as the wind in my face. And I'm so, so thankful. Yesterday I was pretty much like a pouty, sulky, spoiled child. Not that I don't have reason to feel badly some days...but I was just having a big ol pity party. I was definitely the guest of honor.

SO. Time to pick myself up, dust myself off, and thank God for putting people in my life that pray for me when I'm so down.

And for those of you praying: THANK YOU. You really don't know how much you mean to me. You are life-savers. Literally.

Ode to Chronic Illness

An Ode to Chronic Illness
By Kerri Sweeris

O illness of mine which has torn me asunder,
I hate you as much as the weather I'm under.
You rob me of joy and of life and of breath.
And of you, chronic illness I am sick to death!

Chronic illness is something I would not dare send
To kith or to kin, rotten enemy or friend.
It breaks and it weakens and hurts you some more
Til you rail against heaven and stomp on the floor.

This illness I have has cost more that I thought.
Friendships, relationships, more pain than it ought.
One thing rings true when you have something chronic.
You aren't going to fix it with gin or with tonic.

You can't fight your battles, though many they are,
You can't walk or see straight, you can't drive the car.
People will judge you for gluttony and sloth
(Unless you fall down, seize, and at the mouth froth).

I'm so sick of hearing, "But you look so good!"
This illness does things that no illness should.
I may look okay when at me you first glance,
But give me an hour and I may pee my pants!

Incontinence is only one "joy" in my life.
There's double vision, weakness, worry and strife.
Don't forget isolation, boring and lonely,
Even from one who is the one and the only....

Fill in the blank, be it family or spouse;
All I know is I'm often alone in this house.
Some people hang around for a month maybe more,
But soon their own lives come and knock on their door.

So for us who are chronically, totally ill,
We wait and we wait for that one magic pill.
The one that will take us to where we've been wishin'
That oh-so-desired, elusive remission.

Remember for now that if you see someone odd
They may be that way by allowance of God.
They may have some reasons they can't "this or that"
And it's not 'cause they're lazy, insolent or fat.

O illness, my illness, your death I desire
I want to be free again, free to admire
The outdoors, and swimming pools and even bee stings.
I want to be OUTSIDE to hear when birds sing.

I will never give up this fight I am in
And you, blasted illness, you will NEVER win.
I am strong, (and I'm funny) I also have class.
So you chronic illness, can kiss my sweet (BEEP).

EAT YOUR PEAS Faithfully...Book Review

EAT YOUR PEAS Faithfully by Cheryl Karpen is a simply delightful book. This book is a "gift book" if you will; the cover states that it's a "3-minute forever book". The art by Sandy Fougner is beautiful, and even the paper it's printed on has a wonderful texture and richness to it.

You could view this book two ways: as written from God to you, or as written to a loved one, be it family member, spouse, child. It's about faithfulness, and standing by someone through thick and thin. Many pages have a Scripture verse on it that goes along with the "simple truths and happy insights."

One of my favorites says on one side of the book: "When God created you in His magnificence, He created a masterpiece." Then the opposing page says, "There is nobody else quite like you. Nope. Not anywhere. Not among all the six billion people who live on this earth. Your eyes, nose, fingers, heart and mind are uniquely yours. Undoubtedly, God is the artist of them all." And then under that is Psalm 139:13-14, "You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous--how well I know it!"

I would recommend this book to anyone looking for a unique wedding gift, anniversary gift, or even a gift to a friend who needs to know they are unconditionally loved. It's a beautiful book!

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."

Two Wonderful Surprises

When the mailman came today, Jacob happened to be looking out the window, and said, "MOM! We have a package!" MY mom was here too, and she asked me if I wanted her to go get it for me. Of course I said yes, because there was NO way on earth I could wait 5 hours for my husband to get home and get it, and I can't go get it...I'd end up passed out on the hill to the mailbox.

SO. I ask Jacob to go open the door for Grandma because she's going to have a box in her hands. So I look out the window, and here's my poor mother, carrying TWO boxes, and a huge padded envelope. I mean huge. Plus your everyday junk mail, bills, etc.

A dear blogger friend, Patty Ann, had said she sent me something. So I knew one was from her. I open the box, and here is this GORGEOUS, big, soft, fluffy, handmade fleece blanket with all these little angels on it. It is so beautiful. I will have to find my camera and get a picture.

Then, in the huge puffy envelope there was a gorgeous, hand-made prayer shawl. It is made of the softest yarn. My friend Pam (who is also my sister's sister-in-law) who, even though she has her own plate VERY full with health issues, took the time to make this for me. It is amazing!

I am so blessed to have such amazing friends. Today made me feel extra special!

Tomorrow we go to Ann Arbor for plasmapheresis. Hopefully it will be our last trip that way for a while!! I have an appointment with my "new" (local) neurologist April 15, and then it will be however long it takes him to write the orders for pheresis up here. We shall see!

So thank you to all of my friends and family for praying me through some rough times. And extra-special thanks to Pam and Patty for really making my day!

(Oh, and the 2nd box was just medical supplies!)

Exhaustion

Keeping it short today. Yesterday was simply hideous. After all the grief about trying to get a referral to the neurologist so I can have plasmapheresis closer to home, I find out that my primary is GONE for the week, and his PA's assistant called me to try to help.

I have met her, and she is a very, very sweet person. I was trying to explain the idiocy of the situation, but she just kept telling me that she couldn't authorize a referral without a note in my chart that I had talked to my PCP about it, and that she would double check, but I would have to come in and see my PCP NEXT WEEK before I could get a referral.

I just said fine, goodbye. And started bawling. Here's the conversation that followed:

Jacob: Mommy, are you sad?
Me: Yes Jacob, I am sad.
Jacob: Why are you sad Mommy?
Me: Because life is just difficult for Mommy sometimes.
Jacob: {very sweetly coming over and taking my hand} C'mon Mommy. You're tired. You need a nap. Let's go.

So we took a nap. And all was well with the world.

Until I woke up. (Oh, and I don't have to see my PCP, I got the appointment with the neuro.)

Thank God For Internet

I am telling you. If it weren't for the internet, I would have already lost what's left of my mind. (And there ain't much left, let me tall ya.) I have gotten some of the most precious e-mails and comments on my blog. And I appreciate them all more than you know.

This is my social life. I don't go out. I don't have a lot of friends. I don't see the ones I do have very often. I don't see my family often enough. So I get most of my warm fuzzies from all of you. And a lot of encouragement and support that is desperately needed.

I don't hesitate to tell you that I am struggling! Oh my GOSH! The frustration of the administrative part of being chronically ill is enough to drive anyone over the edge. Add chronic illness itself, a 4 1/2 year old the Energizer Bunny couldn't keep up with, and a dog with a cough... Hey, that sounds like the beginning of a bad joke... A sickie, a coughing dog and the Energizer Bunny walk into a bar... Just kidding.

So I'm still waiting to get a referral to get into the neurologist at the place closer to home where I'm going to have pheresis, so I'm going to Ann Arbor Thursday for a treatment so I don't completely crash again before I finally get the arrangements made. I swear. Something so simple and people make it so difficult. Especially people who don't even know what I'm talking about, and yet talk to me like I'M the ignorant one. It's a good think I don't have any energy, because someone I talked to on the phone this morning would have my handprint on her face.

That's it for today....uplifting, I know. : ) Sorry...I'll try harder tomorrow.

Comfort Cross Giveaway WInners

Well, since there were so few comments on this giveaway, and I already had 2 crosses to award, I decided EVERYONE would get one! So you are all winners. I have the crosses, everyone has been notified, and they will be going out in the mail on Monday or Tuesday. These really are beautiful crosses. They are made from genuine olive wood from Bethlehem. SO cool.

So congratulations, and keep watching your mailbox!

Joke Day...Because That's What It Is