I'm putting myself out there by putting this on every cyberplace I can get my hands on, but this bill could effect my life in SIGNIFICANT ways. So I'm taking the chance. I do not mean to offend anyone, and I SO GET that the healthcare system needs fixing. But friends, this is NOT the way! This is an e-mail I sent out earlier, so if you received it, you've already read this information. PLEASE check out this bill at Crista's website (Link on my sidebar Dinner With the King) and READ what the government wil have power to do. I have also posted a note on facebook with the bill information on it as well. THANK YOU.
Hey everyone, We MUST stop this healthcare bill. I have read in several places that Congress is trying to ram this through before their summer break. This cannot happen. Just one tiny part of this massive bill, which is hundreds of pages that NO ONE has completely read...is that the government will decide what "end of life" care people get, how it happens, and when. So we're talking euthanasia people.
According to this plan, if it were in place 8 years ago, I would be dead, instead of racking up a huge hospital bill trying to figure out what was wrong with me, and find a treatment.
This first link is a petition you can sign and comment on that will tell Congress you do NOT want government run healthcare.http://www.aktnow.com/petition/say-no-socialized-medicine
This link will take you to the page where you can write your U.S. House Representative. http://www.house.gov/zip/ZIP2Rep.html
If you live in Michigan, your Senators are Carl Levin (you can write to him at levin.senate.gov/contact/) and Debbie Stabenow. You can write her at stabenow.senate.gov/email.cfm
If you don't live in Michigan, just go to www.senate.gov and put in your info to find your senators and how to contact them.
I am PLEADING with you to take a moment to do this. Tell them to vote NO! To see just SOME of the parts of this hideous bill, go to http://dinnerwiththeking.blogspot.com/and you can see just what the government will have control of. This is not a scare tactic, this is the REAL DEAL. This IS HAPPENING, IN AMERICA. Please, let's stop it!THANK YOU!!!!!
Thursday, July 30, 2009
Wednesday, July 29, 2009
Another Turkey Tale (NOT gross)
So all of the sudden yesterday morning Moose starts barking his fool head off. Which isn't terribly uncommon, I suppose, but this bark had an intensity to it. I look out the window and ses what I assume to be a teenage boy (baggie jeans, t-shirt, straight, thin, chin length hair..who can tell?) "shooing" my turkeys out of the road. I peeked through the window as I still had my p.j.'s on, and didn't really feel like dealing with this.
The turkeys were less than cooperative, and the "helper" wasn't going anywhere, so I begrudgingly got dressed and went outside. By this time, the turkeys were back on our side of the road, and the young LADY told me they were laying in the middle of the road, and she didn't want to hit them. I was thanking her, being polite yet kind of backing slowly towards going back in my house. And then.....
Out of the corner of my eye, I see this gray furball wriggling out of about 4 inches of open window. Since I never got the Good Samaritan's name, I just pointed and said, "your dog." She didn't seem to hear, or comprehend, anyway, so I increased the urgency in my tone just a bit... "um, your DOG!" In a SPLIT SECOND, said furball had flung itself to the ground and had crossed the 50 yards or so between it and the turkey at about Mach 9. (I didn't realize furry grey mops could fly).
The next image will stay with me forever....here is this little dog, (imagine a grey extra large shitzu) teeth firmly embedded into the backside of one turkey. The turkey is much larger than the dog, but obviously not nearly as tenacious. The turkey is squawking and running, flapping its clipped wings, pulling this grey bundle of ferocity all across our yard. The chickens are scattering and clucking and bawking, and I'm just laughing. The poor girl felt horrible...she finally contained the little grey beast, and he came away with about half a dozen huge white feathers hanging out of his mouth like a giant moustache. I have never seen anything so hilarious. My yard looked like a feather pillow exploded.
Meanwhile, another, much bigger dog joined the fray. As it ran by, the girl dove for the dragging leash, and missed. Literally dove. I give her LOTS of credit for effort! This one didn't attack anything, he just thought it was great fun to chase all the birdies running for their lives. I have no idea how this one escaped the car, because I didn't see any other windows open. I clapped and called the bigger dog over, and he came right to me...beautiful dog. Golden Retriever/German Sheperd mix. The young lady was still apologizing profusely (with a rather stunned and horrified look on her face, I might add) and I was assuring her it was no big deal...I certainly didn't want to deter her from "helping" future road-bound creatures!
I called Doug and told him we had issues. He's like, now what? I relayed the incident, and told him we need to cage the turkeys or just eat them now. This has been a lot of work for a couple of meals!
At least having me in your life, you KNOW there's NEVER a dull moment!
The turkeys were less than cooperative, and the "helper" wasn't going anywhere, so I begrudgingly got dressed and went outside. By this time, the turkeys were back on our side of the road, and the young LADY told me they were laying in the middle of the road, and she didn't want to hit them. I was thanking her, being polite yet kind of backing slowly towards going back in my house. And then.....
Out of the corner of my eye, I see this gray furball wriggling out of about 4 inches of open window. Since I never got the Good Samaritan's name, I just pointed and said, "your dog." She didn't seem to hear, or comprehend, anyway, so I increased the urgency in my tone just a bit... "um, your DOG!" In a SPLIT SECOND, said furball had flung itself to the ground and had crossed the 50 yards or so between it and the turkey at about Mach 9. (I didn't realize furry grey mops could fly).
The next image will stay with me forever....here is this little dog, (imagine a grey extra large shitzu) teeth firmly embedded into the backside of one turkey. The turkey is much larger than the dog, but obviously not nearly as tenacious. The turkey is squawking and running, flapping its clipped wings, pulling this grey bundle of ferocity all across our yard. The chickens are scattering and clucking and bawking, and I'm just laughing. The poor girl felt horrible...she finally contained the little grey beast, and he came away with about half a dozen huge white feathers hanging out of his mouth like a giant moustache. I have never seen anything so hilarious. My yard looked like a feather pillow exploded.
Meanwhile, another, much bigger dog joined the fray. As it ran by, the girl dove for the dragging leash, and missed. Literally dove. I give her LOTS of credit for effort! This one didn't attack anything, he just thought it was great fun to chase all the birdies running for their lives. I have no idea how this one escaped the car, because I didn't see any other windows open. I clapped and called the bigger dog over, and he came right to me...beautiful dog. Golden Retriever/German Sheperd mix. The young lady was still apologizing profusely (with a rather stunned and horrified look on her face, I might add) and I was assuring her it was no big deal...I certainly didn't want to deter her from "helping" future road-bound creatures!
I called Doug and told him we had issues. He's like, now what? I relayed the incident, and told him we need to cage the turkeys or just eat them now. This has been a lot of work for a couple of meals!
At least having me in your life, you KNOW there's NEVER a dull moment!
Tuesday, July 28, 2009
How do YOU deal with Anger?
I read a fantastic article on facebook yesterday from Lisa Copen, founder of Rest Ministries. It was about NOT being an angry mom.
I KNOW that EVERY mom has had anger issues with their children...I think of young moms with 3 or 4 kids who could all be running around like hooligans and not listening to a word you say... trashing the house SECONDS after it's picked up. I experience that with ONE, I can't imagine times 4! I remember my mom telling me (about my older siblings, never me, of course!) how she would line them up on the couch and say, "Today I could sell you 3 for a nickel!" My mother is a SAINT, so I know everyone deals with this!
Some days it's no big deal...other days, less can go wrong and I get angrier quicker. A lot of it has to do with how I'm feeling physically. Pain is a horrible mediator. (Unless you're on the receiving end of a spankin'!) When I'm having a super bad MG day, or am having lots of fibro pain, parenting is next to impossible, especially when my completely ALL boy, beautiful, wild, busy, exciting, genius child is on full tilt. His latest is "But how?" Not "Why?" "But how?"
Me: We're going to get our swimmie on to go in the pool.
Jacob: But how?
Me: We're going to put them on.
Jacob: But how?
Me: We're going to take off your clothes, get out your swimmie, put it on, and go outside to the pool.
Jacob: "But how?"
OR
Me: Daddy's getting the car and we're going to the store.
Jacob: But how?
Me: We're going to drive.
Jacob: But how?
Me: We get in the car, turn the key, push the gas pedal, steer the car, and go down the road."
Jacob: "But how?"
Notice you can't say, "Because I said so." Most of the time it's hilarious...but when I'm in pain, or tired, or stressed, or can't see straight (literally)....it's so easy to get angry.
And God tells us we will get angry, He also tells us not to sin in our anger. Yesterday I had to apologize to Jacob for being a crabby Mommy. Between PMS, hunger, pain and prednisone... I was not fit for human company, let alone being a parent! Here's my precious baby's answer: "That's okay, Mommy, I forgive you. I love you even when you're naughty." I was mush.
So when YOUR anger flares.... when you can't escape the situation causing the anger...what do YOU do? Any tips? Tricks? Solutions? I'd LOVE to hear them!
I KNOW that EVERY mom has had anger issues with their children...I think of young moms with 3 or 4 kids who could all be running around like hooligans and not listening to a word you say... trashing the house SECONDS after it's picked up. I experience that with ONE, I can't imagine times 4! I remember my mom telling me (about my older siblings, never me, of course!) how she would line them up on the couch and say, "Today I could sell you 3 for a nickel!" My mother is a SAINT, so I know everyone deals with this!
Some days it's no big deal...other days, less can go wrong and I get angrier quicker. A lot of it has to do with how I'm feeling physically. Pain is a horrible mediator. (Unless you're on the receiving end of a spankin'!) When I'm having a super bad MG day, or am having lots of fibro pain, parenting is next to impossible, especially when my completely ALL boy, beautiful, wild, busy, exciting, genius child is on full tilt. His latest is "But how?" Not "Why?" "But how?"
Me: We're going to get our swimmie on to go in the pool.
Jacob: But how?
Me: We're going to put them on.
Jacob: But how?
Me: We're going to take off your clothes, get out your swimmie, put it on, and go outside to the pool.
Jacob: "But how?"
OR
Me: Daddy's getting the car and we're going to the store.
Jacob: But how?
Me: We're going to drive.
Jacob: But how?
Me: We get in the car, turn the key, push the gas pedal, steer the car, and go down the road."
Jacob: "But how?"
Notice you can't say, "Because I said so." Most of the time it's hilarious...but when I'm in pain, or tired, or stressed, or can't see straight (literally)....it's so easy to get angry.
And God tells us we will get angry, He also tells us not to sin in our anger. Yesterday I had to apologize to Jacob for being a crabby Mommy. Between PMS, hunger, pain and prednisone... I was not fit for human company, let alone being a parent! Here's my precious baby's answer: "That's okay, Mommy, I forgive you. I love you even when you're naughty." I was mush.
So when YOUR anger flares.... when you can't escape the situation causing the anger...what do YOU do? Any tips? Tricks? Solutions? I'd LOVE to hear them!
Monday, July 27, 2009
Back to the Drawing Board
Well, at least it's not the ironing board!
So I am trying very hard to get back to my healthy eating plan. The prednisone made it very difficult, and I admit I all but gave up the last week or so. But I have steeled myself to fight again...I know I have gained back some of the 14 pounds I had lost, and I really let that get to me for a while. But...life goes on.
I can't TELL you how much my success or failure depends on how much I am in the Word. Last week I did exactly ZERO work on my Bible study. And that's about what most of the week added up to progress-wise. ZERO. No exercise (which is always a challenge), lots of moodiness and ravenous appetite. However, as long as you rise one more time than you fall, you can do it. And I need God's help. Every minute of every day.
I am also working on digging out my office. My office is supposed to be my sanctuary...instead, it has turned into the place where everything that doesn't have a specific place goes to hang out. Well, NO MORE! If it doesn't have a specific place, I will find one for it, whether it be in the house or in the garbage! Since I don't have a lot of storage space, I use filing cabinet drawers for any number of things. Well, my husband decided he want one 4-drawer filing cabinet out of the office so the door opens all the way from the office to the bedroom. Go figure...you want the door to OPEN? Very challenging.
I also have to get all of Jacob's school stuff organized. I have stuff from COLLEGE...um, yah, that was like 17 years ago. Oh, how sad. I never thought I would be pushing forty before I started home-schooling. Yikes. God will give me the strength, that's all I know. He's got to or it will never get done!
Kind of rambling today...Oh...one WONDERFUL thing...my eyes were normal almost ALL day yesterday!! Whoooo-Hooooo!!!!!
So I am trying very hard to get back to my healthy eating plan. The prednisone made it very difficult, and I admit I all but gave up the last week or so. But I have steeled myself to fight again...I know I have gained back some of the 14 pounds I had lost, and I really let that get to me for a while. But...life goes on.
I can't TELL you how much my success or failure depends on how much I am in the Word. Last week I did exactly ZERO work on my Bible study. And that's about what most of the week added up to progress-wise. ZERO. No exercise (which is always a challenge), lots of moodiness and ravenous appetite. However, as long as you rise one more time than you fall, you can do it. And I need God's help. Every minute of every day.
I am also working on digging out my office. My office is supposed to be my sanctuary...instead, it has turned into the place where everything that doesn't have a specific place goes to hang out. Well, NO MORE! If it doesn't have a specific place, I will find one for it, whether it be in the house or in the garbage! Since I don't have a lot of storage space, I use filing cabinet drawers for any number of things. Well, my husband decided he want one 4-drawer filing cabinet out of the office so the door opens all the way from the office to the bedroom. Go figure...you want the door to OPEN? Very challenging.
I also have to get all of Jacob's school stuff organized. I have stuff from COLLEGE...um, yah, that was like 17 years ago. Oh, how sad. I never thought I would be pushing forty before I started home-schooling. Yikes. God will give me the strength, that's all I know. He's got to or it will never get done!
Kind of rambling today...Oh...one WONDERFUL thing...my eyes were normal almost ALL day yesterday!! Whoooo-Hooooo!!!!!
Saturday, July 25, 2009
His Name Is Jesus
This is one of my favorite Third Day Songs. I don't think they make bad ones, but this one is GOOD. I dare you to read the words (I wish I could post the song but I don't know how, and it wouldn't load anyway...) and not worship. It's unreal. Joanna was talking about worship on her blog (and maybe at my house?) but it got me thinking. I haven't been doing any studies this week. I haven't been in the Word, I haven't been listening to much music, which ALWAYS changes my mood. ALWAYS. I can't listen to my favorite Christian music and NOT be moved. Just can't.
SO. I am going to listen to music every day. Even if it's one song. My eyes have been really bad, but I'll figure it out. Maybe I'll just have to wear my eye patch while I study. So it takes longer. I need to do it. God needs me to do it. The Prednisone has REALLY thrown me off...
The hardest part (well it's a tie) is the food cravings and bizarre hunger, and the moods. Joanna (what would I do without her?) told me about Evening Primrose Oil, and it does help with the moods. I go to the neuro for a follow-up on Friday the 31st, and can start weaning down then. It will probably be about 4 months before I get back to where I was. BUT WE WILL GET THERE!
Anyway...read these words...if you know the song, sing it in your head or out loud or play it on your stereo. Just let it sink it.
"Who is this King of Glory?
Persues me with His love
And holds with each hearing
of His softly spoken words.
My conscience a reminder
Of forgiveness that I need,
Who is this King of Glory,
Who offers it to me?
Who is this King of Angels
This blessed Prince of Peace?
Revealing things of heaven
And all its mysteries.
My spirit ever longing
For His grace in which to stand,
Who is this King of Glory,
Son of God and Son of Man?
His name is Jesus,
Precious Jesus.
Lord Almighty,
King of my heart,
King of Glory!
Who is this King of Glory
With strength and majesty
And wisdom beyond measure?
Gracious King of Kings,
The Lord of earth and heaven,
The Creator of all things,
He is the King of Glory,
and He's everything to me!
His name is Jesus,
Precious Jesus.
Lord Almighty,
King of my heart,
King of glory!
The Lord of earth and heaven,
The Creator of all things,
He is the King of Glory
He's everything to me!
His name is Jesus,
Precious Jesus.
The Lord Almighty.
King of my heart,
King of Glory!
The King of my heart
King of Glory
SO. I am going to listen to music every day. Even if it's one song. My eyes have been really bad, but I'll figure it out. Maybe I'll just have to wear my eye patch while I study. So it takes longer. I need to do it. God needs me to do it. The Prednisone has REALLY thrown me off...
The hardest part (well it's a tie) is the food cravings and bizarre hunger, and the moods. Joanna (what would I do without her?) told me about Evening Primrose Oil, and it does help with the moods. I go to the neuro for a follow-up on Friday the 31st, and can start weaning down then. It will probably be about 4 months before I get back to where I was. BUT WE WILL GET THERE!
Anyway...read these words...if you know the song, sing it in your head or out loud or play it on your stereo. Just let it sink it.
"Who is this King of Glory?
Persues me with His love
And holds with each hearing
of His softly spoken words.
My conscience a reminder
Of forgiveness that I need,
Who is this King of Glory,
Who offers it to me?
Who is this King of Angels
This blessed Prince of Peace?
Revealing things of heaven
And all its mysteries.
My spirit ever longing
For His grace in which to stand,
Who is this King of Glory,
Son of God and Son of Man?
His name is Jesus,
Precious Jesus.
Lord Almighty,
King of my heart,
King of Glory!
Who is this King of Glory
With strength and majesty
And wisdom beyond measure?
Gracious King of Kings,
The Lord of earth and heaven,
The Creator of all things,
He is the King of Glory,
and He's everything to me!
His name is Jesus,
Precious Jesus.
Lord Almighty,
King of my heart,
King of glory!
The Lord of earth and heaven,
The Creator of all things,
He is the King of Glory
He's everything to me!
His name is Jesus,
Precious Jesus.
The Lord Almighty.
King of my heart,
King of Glory!
The King of my heart
King of Glory
Thursday, July 23, 2009
Beyond Casseroles: Ways to Help the Chronically Ill
Good morning.
The last time I frequently saw 5:30 in the morning was when I was working late second shifts at Towne Air Freight, going out, and going to bed after the 5AM news. Now I'm waking UP then. Oh how life changes. {All said and done, however, I would choose where I am, AS I am, given the opportunity. I've come waaaaay too far to go back now!}
So I see this awesome book online by Lisa Copen, founder of Rest Ministries. (She also puts together HopeKeepers Magazine, and all of these ministries are affiliated with Joni and Friends. Lisa has done MUCH to bring Invisible Illness Awareness to the public at large, as well as offer MANY venues for the chronically ill to utilize. There are support groups, Illness Twitters, blogs, you name it. Thank you Lisa!)
Anyway...back to this book. It's called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." I haven't gotten through all of them yet, but I would like to share some of my favorites. This book is such a blessing! Every church and ministry should have this book. I know that SO many folks WANT to help, they just don't always know what to do. And being the chronically ill person, sometimes it's hard enough to ask for help PERIOD, let alone specifically say things like, "could you please scrub my shower?"
* Ask, "What do you wish people knew about your illness?
* Instead of saying, "I will pray for you," say, "Can I pray with you right now?"
* Ask her to do spontaneous things...she may be more likely to participate since she knows if it's a good day or a bad day.
* Say, "While you're in the hospital, I'd be glad to take care of your pet."
* Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead, pick something you are willing to do and then ask her permission. Try using creative coupons. (There are some in the back of the book).
* Ask your church to add more disabled parking spaces. There are never enough.
* If it seems like something dramatic is always going on in her life, it just may be. Drug shortages, insurance issues--each are life-changing, and people with chronic illnes feel out of control most of the time.
*NEVER visit her if you think you may be getting a cold. {or if someone in your immediate family is sick}. If in doubt, give her a call.
* Take her kids for an afternoon or evening so she can have some much needed alone time, or go out with her spouse.
* Ask her if she has a list of things that need to be done {change a lightbulb, hang a picture} and help out when you're there.
* Offer to clean the shower stall or tub.
* Even if your friend lives with others, remember that she still may go days without speaking to anyone else. Send a card. Give her a call.
* For a special gift, ask her friends to write on an index card something your friend has done that has encouraged them: an encouraging word or Scripture, cartoon, or anything; then bind them in an album.
You can find this book and many more on chronic illness at www.comfortzonebooks.com. It is so important for the chronically ill to not feel forgotten. It's so easy for everyone, myself included, to get in the mindset of "out of sight, out of mind." Chronic illness is just that, chronic. It doesn't go away. We live with it every day, every night, every week, every month. Through every anniversary, good and bad, through holidays and birthdays, weddings and funerals. We push through. A lot of time we fake it for the sake of others. We may not be feeling nearly as well as we are portraying ourselves to be.
To all my wonderful friends and family...I love you all, and I thank you for your prayers, and for being there for me. May God bless you as you have blessed me!
The last time I frequently saw 5:30 in the morning was when I was working late second shifts at Towne Air Freight, going out, and going to bed after the 5AM news. Now I'm waking UP then. Oh how life changes. {All said and done, however, I would choose where I am, AS I am, given the opportunity. I've come waaaaay too far to go back now!}
So I see this awesome book online by Lisa Copen, founder of Rest Ministries. (She also puts together HopeKeepers Magazine, and all of these ministries are affiliated with Joni and Friends. Lisa has done MUCH to bring Invisible Illness Awareness to the public at large, as well as offer MANY venues for the chronically ill to utilize. There are support groups, Illness Twitters, blogs, you name it. Thank you Lisa!)
Anyway...back to this book. It's called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." I haven't gotten through all of them yet, but I would like to share some of my favorites. This book is such a blessing! Every church and ministry should have this book. I know that SO many folks WANT to help, they just don't always know what to do. And being the chronically ill person, sometimes it's hard enough to ask for help PERIOD, let alone specifically say things like, "could you please scrub my shower?"
* Ask, "What do you wish people knew about your illness?
* Instead of saying, "I will pray for you," say, "Can I pray with you right now?"
* Ask her to do spontaneous things...she may be more likely to participate since she knows if it's a good day or a bad day.
* Say, "While you're in the hospital, I'd be glad to take care of your pet."
* Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead, pick something you are willing to do and then ask her permission. Try using creative coupons. (There are some in the back of the book).
* Ask your church to add more disabled parking spaces. There are never enough.
* If it seems like something dramatic is always going on in her life, it just may be. Drug shortages, insurance issues--each are life-changing, and people with chronic illnes feel out of control most of the time.
*NEVER visit her if you think you may be getting a cold. {or if someone in your immediate family is sick}. If in doubt, give her a call.
* Take her kids for an afternoon or evening so she can have some much needed alone time, or go out with her spouse.
* Ask her if she has a list of things that need to be done {change a lightbulb, hang a picture} and help out when you're there.
* Offer to clean the shower stall or tub.
* Even if your friend lives with others, remember that she still may go days without speaking to anyone else. Send a card. Give her a call.
* For a special gift, ask her friends to write on an index card something your friend has done that has encouraged them: an encouraging word or Scripture, cartoon, or anything; then bind them in an album.
You can find this book and many more on chronic illness at www.comfortzonebooks.com. It is so important for the chronically ill to not feel forgotten. It's so easy for everyone, myself included, to get in the mindset of "out of sight, out of mind." Chronic illness is just that, chronic. It doesn't go away. We live with it every day, every night, every week, every month. Through every anniversary, good and bad, through holidays and birthdays, weddings and funerals. We push through. A lot of time we fake it for the sake of others. We may not be feeling nearly as well as we are portraying ourselves to be.
To all my wonderful friends and family...I love you all, and I thank you for your prayers, and for being there for me. May God bless you as you have blessed me!
Tuesday, July 21, 2009
Trying to Salvage My Attitude
Hey all.
Yikes. I was so cranky yesterday. Just have had enough, ya know? I just can't seem to catch a break, and then last night my sister calls me to tell me that her husband's 12 year old cousin is being taken off life support. Talk about a slap in the face.
I am so absolutely human. So selfish. So self-absorbed. If I am not in the Word, reading Christian books, listening to Christian music almost 24/7, it seems like I can't hold it together. At least I KNOW I'm pathetic, right? Isn't that the first step? Admitting you have a problem...?
Ug. So yah, I see my attitude swirling down the flusher, and I'm trying to save it.....trying to stay positive. Trying to be thankful when I really do have so much to be thankful for. I'm just tired. Tired of it all. The pain, heartache, horror, disappointment, tragedy of this broken, dying world.
Jacob was up about 6 times last night...I got about 4 hours of sleep....doesn't that ALWAYS seem to happen when you need it most??? Okay, Lord. I could use a break here.....
Yikes. I was so cranky yesterday. Just have had enough, ya know? I just can't seem to catch a break, and then last night my sister calls me to tell me that her husband's 12 year old cousin is being taken off life support. Talk about a slap in the face.
I am so absolutely human. So selfish. So self-absorbed. If I am not in the Word, reading Christian books, listening to Christian music almost 24/7, it seems like I can't hold it together. At least I KNOW I'm pathetic, right? Isn't that the first step? Admitting you have a problem...?
Ug. So yah, I see my attitude swirling down the flusher, and I'm trying to save it.....trying to stay positive. Trying to be thankful when I really do have so much to be thankful for. I'm just tired. Tired of it all. The pain, heartache, horror, disappointment, tragedy of this broken, dying world.
Jacob was up about 6 times last night...I got about 4 hours of sleep....doesn't that ALWAYS seem to happen when you need it most??? Okay, Lord. I could use a break here.....
Monday, July 20, 2009
Calgon....take me away!!!!!!
Do they still even make that stuff? I guess it doesn't really matter since I can get IN the tub but I'd never get out. Not strong enough. Ever.
What a weekend. I'll start with the highlights. I went McTalking with Joanna, and was very proud of myself that I got grilled chicken and a salad. So I could have a frappe! Big hug to the inventor of the frappe! Had a great talk with Miss Joanna.
That was the highlight. Let's see, before I left for McTalking, Doug hurt his back again. So...I insisted he go to Plainwell to the chiropractor. I told him I could drive him or if he was capable he could drive, but he had to go one way or another. He said he felt good enough for me to go with Joanna, so he and Jacob laid down and napped almost the whole time I was gone. Good deal.
Also before McTalking time, the most horrible thing ever. Our brown turkey (we have 3 turkeys that we bought for butchering eventually) hasn't been himself for a few weeks. I told Doug that something wasn't right...the turkey had a big swollen knee, but other than that, his eyes were bright, he was eating and drinking, but was on the ground all the time. So I made Doug build a cage for him, so he could at least get off the ground. I also told him I could no longer eat him because I had developed feelings for him. I felt sorry for him. I can eat the white ones because I could care less about them. They ate my strawberries.
Anywho..I digress. So Jacob and I were outside Saturday morning, and I went over to check on brown turkey...he just didn't look right. One of his wings was kind of out and he was shaking a little and had knocked his food bowl over. So I went to the back of the cage to open the door and give him more food to see if he would eat. Okay, I'm warning you...if you are even a teeeeeny bit squeamish, STOP READING NOW.
As soon as I opened the cage, I saw this gaping wound on brown tukeys backside that had obviously been there for a while. I saw movement. ON THE WOUND. You know what THOSE were. I gagged. I almost puked. I smelled decay. I saw necrosis. I felt HORRIBLE. I knew I had to take care of it. I had been telling Doug there was something else wrong....call it maternal instinct. So I went to get the gun...Oh my gosh it was horrible. I was having Old Yeller flashbacks. All I could think of though was ending this poor thing's suffering. It felt like 90 minutes but it was probably more like 90 seconds. I was going to just cover the whole cage and let Doug deal with it when he got back, but with his back and all....and I made the decision to put him down, so I had to deal with it. I got the biggest, thickest gloves I could find, and then a big rag towel and a 30 gallon heavy duty trash bag. I couldn't even touch the thing with my the gloves, so I wrapped the towel around it and pulled it to the edge of the cage, and shimmied it into the garabage bag. I can't BELIEVE I did this without puking.
I went inside and totally had to splash ice cold water on my face and try not to pass out. I can't imagine how people can just shoot things. Animals, people...I mean, I have no problem with hunting...especially when it's for food like we do...but I just couldn't do it.
So...my weekend culminated last night, when, (after giving the dog a bath because he rolled in something nasty Saturday night, dishes, helping with all the chores, brushing the dog, vacuuming all the dog hair, taking care of Doug and Jacob all day), on the way to get the phone at about 8 PM, I slipped on the tile where said dog had slobbered his water all over, almost did the splits, tried righting myself, killed my foot, and feel now like I've got whiplash from head to toe.
Don't you wish you could be me??????
What a weekend. I'll start with the highlights. I went McTalking with Joanna, and was very proud of myself that I got grilled chicken and a salad. So I could have a frappe! Big hug to the inventor of the frappe! Had a great talk with Miss Joanna.
That was the highlight. Let's see, before I left for McTalking, Doug hurt his back again. So...I insisted he go to Plainwell to the chiropractor. I told him I could drive him or if he was capable he could drive, but he had to go one way or another. He said he felt good enough for me to go with Joanna, so he and Jacob laid down and napped almost the whole time I was gone. Good deal.
Also before McTalking time, the most horrible thing ever. Our brown turkey (we have 3 turkeys that we bought for butchering eventually) hasn't been himself for a few weeks. I told Doug that something wasn't right...the turkey had a big swollen knee, but other than that, his eyes were bright, he was eating and drinking, but was on the ground all the time. So I made Doug build a cage for him, so he could at least get off the ground. I also told him I could no longer eat him because I had developed feelings for him. I felt sorry for him. I can eat the white ones because I could care less about them. They ate my strawberries.
Anywho..I digress. So Jacob and I were outside Saturday morning, and I went over to check on brown turkey...he just didn't look right. One of his wings was kind of out and he was shaking a little and had knocked his food bowl over. So I went to the back of the cage to open the door and give him more food to see if he would eat. Okay, I'm warning you...if you are even a teeeeeny bit squeamish, STOP READING NOW.
As soon as I opened the cage, I saw this gaping wound on brown tukeys backside that had obviously been there for a while. I saw movement. ON THE WOUND. You know what THOSE were. I gagged. I almost puked. I smelled decay. I saw necrosis. I felt HORRIBLE. I knew I had to take care of it. I had been telling Doug there was something else wrong....call it maternal instinct. So I went to get the gun...Oh my gosh it was horrible. I was having Old Yeller flashbacks. All I could think of though was ending this poor thing's suffering. It felt like 90 minutes but it was probably more like 90 seconds. I was going to just cover the whole cage and let Doug deal with it when he got back, but with his back and all....and I made the decision to put him down, so I had to deal with it. I got the biggest, thickest gloves I could find, and then a big rag towel and a 30 gallon heavy duty trash bag. I couldn't even touch the thing with my the gloves, so I wrapped the towel around it and pulled it to the edge of the cage, and shimmied it into the garabage bag. I can't BELIEVE I did this without puking.
I went inside and totally had to splash ice cold water on my face and try not to pass out. I can't imagine how people can just shoot things. Animals, people...I mean, I have no problem with hunting...especially when it's for food like we do...but I just couldn't do it.
So...my weekend culminated last night, when, (after giving the dog a bath because he rolled in something nasty Saturday night, dishes, helping with all the chores, brushing the dog, vacuuming all the dog hair, taking care of Doug and Jacob all day), on the way to get the phone at about 8 PM, I slipped on the tile where said dog had slobbered his water all over, almost did the splits, tried righting myself, killed my foot, and feel now like I've got whiplash from head to toe.
Don't you wish you could be me??????
Thursday, July 16, 2009
What?? WAIT???
Okay. So I've said before I'm a "hit-me-upside-the-head-with-a-2x4" kind of girl when it comes to "getting it" sometimes. God usually has to tell me from about 32 different sources what He's trying to get across because I'm so thick-headed sometimes. (No, really...I can be stubborn. I know it's SUPER hard to believe...: )
So for a while now I've had a verse on an envelope crammed into a paper holder at my desk: "WAIT FOR THE LORD. BE STRONG, TAKE HEART, AND WAIT FOR THE LORD."
Psalm 27:14 {in the distance we hear the sanding of wood....hey, I may get hit upside the head, but I don't need splinters!}
Any of you who have known me for any length of time (especially before I got sick) know that I haven't always been the most patient of people. No, I'm serious! Driving. Waiting in lines. At the DMV. (Ug!) One thing that slowed me down a LOT was getting sick. If you've ever been in the hospital, you know that real time and "hospital time" are 2 totally different things. In real time, 2 hours is 2 hours. In "hospital time" 2 hours can be a day and a half! When you're lying in bed, unable to move, tubes sticking out of everywhere, you need to learn patience...quickly!
But alas, how soon we forget! Yesterday I was working on the Bible study I'm doing with my friend Joanna called No Other gods. AWESOME, by the way. The last thing I did was to read Colossians 3:1-17 three times, in 3 different versions. The amplified Bible had this to say about patience: "tireless and long-suffering, and has the power to endure whatever comes with good temper." WHAT? With good temper??? You mean after I learn to wait I have to do it without grumbling and yelling? {I'm feeling as if something is heading my way....}
THEN, I get on facebook, and a dear friend sent me a wonderful devotional by Rick Warren. Here it is in part:
How God Builds You Faith: Delay
by Rick Warren
"But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day!" (Habakkuk 2:3 LB).
"Even as you make a decision to follow the dream God places in your heart, you can expect a delay. God will not fulfill your dream immediately because this is another step toward building your faith.
Have you ever been in a hurry when God wasn't? It's so irritating! You're ready, but God isn't. God wants to work on you before He works on the project. Every believer must go through the University of Learning to Wait (ULW). Some of us are still working on our degrees from ULW!
• Noah waited 120 years from the time he started building the ark until it began to rain.
• Abraham was told he would be the father of a great nation and didn't have a child until he was 99.
• God told Moses he would be the leader to lead his people out of 400 years of slavery, but then made him wait in the desert 40 years.
• Joseph spent years in prison before God raised him up and he became the ruler God wanted him to be.
• God had David anointed as king, but then David waited for years until he actually got to be king.We all have to go through these waiting periods.
Even Jesus waited for 30 years in the carpenter's shop before setting out on his public ministry.Why do we wait? It teaches us to trust in God. We learn that His timing is perfect. One of the facts we have to learn is this: God's delay never destroys His purpose.A delay is not a denial. Children must learn the difference between "no" and "not yet," and so must we. Many times we think God is saying, "No," but He is saying, "Not yet."
{SMACK!}
After doing the Bible study yesterday I was saying to God, "But waiting???? Couldn't you pick something I'm a LITTLE better at?? The hardest words in my vocabulary are wait, be still, have patience, be silent...."
So now I just have to say, Okay, Lord, I get it. I understand, and I will try to hang in there. I may mess up, but I will try my best to be patient....WITH "good temper!" And remember, God is NEVER late. But He is never early either! : )
So for a while now I've had a verse on an envelope crammed into a paper holder at my desk: "WAIT FOR THE LORD. BE STRONG, TAKE HEART, AND WAIT FOR THE LORD."
Psalm 27:14 {in the distance we hear the sanding of wood....hey, I may get hit upside the head, but I don't need splinters!}
Any of you who have known me for any length of time (especially before I got sick) know that I haven't always been the most patient of people. No, I'm serious! Driving. Waiting in lines. At the DMV. (Ug!) One thing that slowed me down a LOT was getting sick. If you've ever been in the hospital, you know that real time and "hospital time" are 2 totally different things. In real time, 2 hours is 2 hours. In "hospital time" 2 hours can be a day and a half! When you're lying in bed, unable to move, tubes sticking out of everywhere, you need to learn patience...quickly!
But alas, how soon we forget! Yesterday I was working on the Bible study I'm doing with my friend Joanna called No Other gods. AWESOME, by the way. The last thing I did was to read Colossians 3:1-17 three times, in 3 different versions. The amplified Bible had this to say about patience: "tireless and long-suffering, and has the power to endure whatever comes with good temper." WHAT? With good temper??? You mean after I learn to wait I have to do it without grumbling and yelling? {I'm feeling as if something is heading my way....}
THEN, I get on facebook, and a dear friend sent me a wonderful devotional by Rick Warren. Here it is in part:
How God Builds You Faith: Delay
by Rick Warren
"But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass. Just be patient! They will not be overdue a single day!" (Habakkuk 2:3 LB).
"Even as you make a decision to follow the dream God places in your heart, you can expect a delay. God will not fulfill your dream immediately because this is another step toward building your faith.
Have you ever been in a hurry when God wasn't? It's so irritating! You're ready, but God isn't. God wants to work on you before He works on the project. Every believer must go through the University of Learning to Wait (ULW). Some of us are still working on our degrees from ULW!
• Noah waited 120 years from the time he started building the ark until it began to rain.
• Abraham was told he would be the father of a great nation and didn't have a child until he was 99.
• God told Moses he would be the leader to lead his people out of 400 years of slavery, but then made him wait in the desert 40 years.
• Joseph spent years in prison before God raised him up and he became the ruler God wanted him to be.
• God had David anointed as king, but then David waited for years until he actually got to be king.We all have to go through these waiting periods.
Even Jesus waited for 30 years in the carpenter's shop before setting out on his public ministry.Why do we wait? It teaches us to trust in God. We learn that His timing is perfect. One of the facts we have to learn is this: God's delay never destroys His purpose.A delay is not a denial. Children must learn the difference between "no" and "not yet," and so must we. Many times we think God is saying, "No," but He is saying, "Not yet."
{SMACK!}
After doing the Bible study yesterday I was saying to God, "But waiting???? Couldn't you pick something I'm a LITTLE better at?? The hardest words in my vocabulary are wait, be still, have patience, be silent...."
So now I just have to say, Okay, Lord, I get it. I understand, and I will try to hang in there. I may mess up, but I will try my best to be patient....WITH "good temper!" And remember, God is NEVER late. But He is never early either! : )
Wednesday, July 15, 2009
Living with DAILY Frustration
I have been going back and forth in my mind...I have this burning propensity to educate. I mean, yes, I went to school to teach, and yes, I will be home-schooling Jacob, but I want to educate people...on chronic illness. On invisible illness. Individuals, churches, organizations, etc. But I don't know how to get started.
Doug and I were talking about this on the way to Ann Arbor yesterday. I was thinking of contacting area churches to see if I could speak to them about this...about how people with chronic illness feel, especially younger people. About how isolating it is...how frustrating and comdemning it can feel...how absolutely powerless you can feel....
But all those things I just listed come into play...how can I schedule speaking engagements when I may be too weak to go? Doug summed it up: I need to find something with no dates or deadlines. The only thing that leaves is writing. Which I'm doing....I'm blogging, tweeting, e-mailing, and all the other e-things one can do with dial up. But it's not enough somehow. I'm praying that God shows me what to do. How do I get "out there" without leaving home? How can I use my brain without my body's cooperation?
I've never been a girl who liked limits...but MAN have I had to be a quick study. I know I have to take care of myself and my family before I go elsewhere...But I've been mistreated, misjudged, misunderstood SO many times that I want others to know what it's really like. Part of taking care of myself is having a purpose.
I have to get crankin' on my book...maybe that will be it.
It's so difficult living with this constant frustration. I need to learn to be content where I am, yet I don't think it's wrong to strive to want more...to help more....to educate....I really dont' believe most churches today know how to handle chronic illness. I have been BLESSED, BLESSED, BLESSED with many friends and helpful family members who help me frequently. Because of my illness and its varying degrees of severity, I do not attend church "regularly" right now, not for lack of want, believe me.
WITHOUT PLACING BLAME, there have been several churches that I have been involved with on many different levels that just don't know what to do. But I'm realizing it's not because they dont' WANT to, it's because they don't know how...or don't have the means. They will stand with you, help you for a while, but it seems that chronic illness always outlasts its contemporaries. If a church member who always visits moves away, the chronically ill remain. If the pastor gets called to another church, the sick stay. It's not easy or fun or even desirous to ask for and need help. It's frustrating. It can be humiliating. It can feel degrading. It can be embarassing. But the needs remain.
People are busy. Life is busy. It's demanding. Everyone has a life. Even those with illness. How do you balance needing something but not being demanding or selfish? As a caregiver, how do you balance helping others while living your own life? A conundrum to be sure.
I am open to suggestions...to what I can do to educate others, to what YOUR church has in place for those who are chronically ill...
To those who are caregivers, to those who volunteer, who help, who listen, who grieve with, who hold the hand of, who sit with the chronically ill....GOD BLESS YOU. You are angels. You are Jesus with skin. You may NEVER realize the good you can do by just being there. Thank you.
Doug and I were talking about this on the way to Ann Arbor yesterday. I was thinking of contacting area churches to see if I could speak to them about this...about how people with chronic illness feel, especially younger people. About how isolating it is...how frustrating and comdemning it can feel...how absolutely powerless you can feel....
But all those things I just listed come into play...how can I schedule speaking engagements when I may be too weak to go? Doug summed it up: I need to find something with no dates or deadlines. The only thing that leaves is writing. Which I'm doing....I'm blogging, tweeting, e-mailing, and all the other e-things one can do with dial up. But it's not enough somehow. I'm praying that God shows me what to do. How do I get "out there" without leaving home? How can I use my brain without my body's cooperation?
I've never been a girl who liked limits...but MAN have I had to be a quick study. I know I have to take care of myself and my family before I go elsewhere...But I've been mistreated, misjudged, misunderstood SO many times that I want others to know what it's really like. Part of taking care of myself is having a purpose.
I have to get crankin' on my book...maybe that will be it.
It's so difficult living with this constant frustration. I need to learn to be content where I am, yet I don't think it's wrong to strive to want more...to help more....to educate....I really dont' believe most churches today know how to handle chronic illness. I have been BLESSED, BLESSED, BLESSED with many friends and helpful family members who help me frequently. Because of my illness and its varying degrees of severity, I do not attend church "regularly" right now, not for lack of want, believe me.
WITHOUT PLACING BLAME, there have been several churches that I have been involved with on many different levels that just don't know what to do. But I'm realizing it's not because they dont' WANT to, it's because they don't know how...or don't have the means. They will stand with you, help you for a while, but it seems that chronic illness always outlasts its contemporaries. If a church member who always visits moves away, the chronically ill remain. If the pastor gets called to another church, the sick stay. It's not easy or fun or even desirous to ask for and need help. It's frustrating. It can be humiliating. It can feel degrading. It can be embarassing. But the needs remain.
People are busy. Life is busy. It's demanding. Everyone has a life. Even those with illness. How do you balance needing something but not being demanding or selfish? As a caregiver, how do you balance helping others while living your own life? A conundrum to be sure.
I am open to suggestions...to what I can do to educate others, to what YOUR church has in place for those who are chronically ill...
To those who are caregivers, to those who volunteer, who help, who listen, who grieve with, who hold the hand of, who sit with the chronically ill....GOD BLESS YOU. You are angels. You are Jesus with skin. You may NEVER realize the good you can do by just being there. Thank you.
Friday, July 10, 2009
Nine Words I Never Dreamed I'd Utter
Me: {walking calmly into the living room whilst my hubby was trying to relax for a moment}
"I just shot a woodchuck through the mudroom screen!"
Doug: Coming fully alert as soon as he saw the loaded rifle in my hand....." YOU WHAT???"
Actually I think the FIRST thing I said was, "How do you get the bullets out of this thing??" I couldn't get the cartridge out. Poor Doug was like... huh? Last thing he knew I was giving Jacob a bath, insisting he rest for a few minutes, and there I am with a crazed look in my eye, adrenaline running through my veins, asking him how to unload the usually-UNloaded gun!
So here's the story:
I was giving Jacob a bath. He likes to play for a while, so I was just gazing out the window. I happened to notice a woodchuck coming out of its hole by the barn. I was temporarily devoid of my senses as I thought, I wonder if I could shoot that thing? You see, they dig up my yard {which is a health hazard for me because I'm already off balance!}, they eat my flowers {don't we ALL want the world to be a more beautiful palce?} and they destroy my fruit trees {not only taking food from out of the mouth of my child but also undermining our efforts to save the planet!}. Therefore, Doug usually ends up with a tally sheet of woodchuck kills on the fridge every year.
So, I'm looking at the woodchuck, conjuring up the devastation it causes, and something quite primal rises to the surface (probably the steroids...OH MY GOSH!!!! ROID RAGE!) I go to the closet, grab the gun, grab the ammo (from a separate area of course), rip the slide back to put a round in the chamber, and sneak into the mudroom.
Now I know from past experience that if you open the front door the little buggers hear it and scamper back into their hole. SO...I did just what Doug would have...HAS done....in the past: I put the end of the barrel right up to the screen, lined the little furbeast up in my crosshairs, and squeezed.
Nothing. Oops. Safety still on.
Take the safety off, barrel to screen, lined the little furbeast up in my crosshairs, and "Phht." (Well, it IS only a .22)!! It disappeared, but I didn't know if I got it or not, because it was in long grass, and still right by it's hole.
So back to Doug on the couch.
Me: Go see if I got it!
Doug: You go see.
Me: Eeewwww, are you kidding?
Doug: {rolling eyes a bit} Fine.
So I finish getting Jacob's bath, get him out, and glance out the window again. I see Doug walking up the steps with his gloves on, so I knew right away that I got it.
I knew then, without a shadow of a doubt. I had become what I once had feared....
I was a redneck.
And somehow, oddly proud of it.
{Hey, at least I didn't holler "yeeeeee-haw! when I shot!}
So now The Mighty Hunter must share his tally space on the frig...Doug 1, Me 1, and Moose, 2. Well he IS a hunting dog, and he IS outside way more than either of us!
"I just shot a woodchuck through the mudroom screen!"
Doug: Coming fully alert as soon as he saw the loaded rifle in my hand....." YOU WHAT???"
Actually I think the FIRST thing I said was, "How do you get the bullets out of this thing??" I couldn't get the cartridge out. Poor Doug was like... huh? Last thing he knew I was giving Jacob a bath, insisting he rest for a few minutes, and there I am with a crazed look in my eye, adrenaline running through my veins, asking him how to unload the usually-UNloaded gun!
So here's the story:
I was giving Jacob a bath. He likes to play for a while, so I was just gazing out the window. I happened to notice a woodchuck coming out of its hole by the barn. I was temporarily devoid of my senses as I thought, I wonder if I could shoot that thing? You see, they dig up my yard {which is a health hazard for me because I'm already off balance!}, they eat my flowers {don't we ALL want the world to be a more beautiful palce?} and they destroy my fruit trees {not only taking food from out of the mouth of my child but also undermining our efforts to save the planet!}. Therefore, Doug usually ends up with a tally sheet of woodchuck kills on the fridge every year.
So, I'm looking at the woodchuck, conjuring up the devastation it causes, and something quite primal rises to the surface (probably the steroids...OH MY GOSH!!!! ROID RAGE!) I go to the closet, grab the gun, grab the ammo (from a separate area of course), rip the slide back to put a round in the chamber, and sneak into the mudroom.
Now I know from past experience that if you open the front door the little buggers hear it and scamper back into their hole. SO...I did just what Doug would have...HAS done....in the past: I put the end of the barrel right up to the screen, lined the little furbeast up in my crosshairs, and squeezed.
Nothing. Oops. Safety still on.
Take the safety off, barrel to screen, lined the little furbeast up in my crosshairs, and "Phht." (Well, it IS only a .22)!! It disappeared, but I didn't know if I got it or not, because it was in long grass, and still right by it's hole.
So back to Doug on the couch.
Me: Go see if I got it!
Doug: You go see.
Me: Eeewwww, are you kidding?
Doug: {rolling eyes a bit} Fine.
So I finish getting Jacob's bath, get him out, and glance out the window again. I see Doug walking up the steps with his gloves on, so I knew right away that I got it.
I knew then, without a shadow of a doubt. I had become what I once had feared....
I was a redneck.
And somehow, oddly proud of it.
{Hey, at least I didn't holler "yeeeeee-haw! when I shot!}
So now The Mighty Hunter must share his tally space on the frig...Doug 1, Me 1, and Moose, 2. Well he IS a hunting dog, and he IS outside way more than either of us!
Wednesday, July 8, 2009
Now We Are So Happy We Do The Dance Of Joy!
{Any Perfect Strangers fans left out there???}
NO AVASCULAR NECROSIS!!!! Woot! Woot!
Everything looked great on the x-ray...sometimes it doesn't show up on x-ray, but all the other markers they look for that would indicate further testing were all within normal limits. Yeeee-Haaa!!!!! For once I DO NOT have the rare, crazy side effect. THANK THE LORD!!!!! They are thinking it's a flare up of the reactive arthritis, caused by too big of a drop in steroids. (duh)
K, so here's the plan: the prednisone {we allll know how I feel about it, so I'm just leaving it at that} stays at 30mg per day until I go 3 weeks without pheresis without crashing. Since the prednisone is acting like a ginormous shot of adrenaline, I can't quite imagine crashing! So I go to Ann Arbor this Friday, next Tuesday, and then we won't go again for 3 weeks. Then I will taper down rrreeeeeaaalllyyy slowly again, so it will probably be 4-5 months until I'm back at my base dosage. But that argument is for another day. Tonight we are CELEBRATION ONLY!!!
Thanks again for all your love, prayers, support, meals, cards...I really can't express how much it means.
NO AVASCULAR NECROSIS!!!! Woot! Woot!
Everything looked great on the x-ray...sometimes it doesn't show up on x-ray, but all the other markers they look for that would indicate further testing were all within normal limits. Yeeee-Haaa!!!!! For once I DO NOT have the rare, crazy side effect. THANK THE LORD!!!!! They are thinking it's a flare up of the reactive arthritis, caused by too big of a drop in steroids. (duh)
K, so here's the plan: the prednisone {we allll know how I feel about it, so I'm just leaving it at that} stays at 30mg per day until I go 3 weeks without pheresis without crashing. Since the prednisone is acting like a ginormous shot of adrenaline, I can't quite imagine crashing! So I go to Ann Arbor this Friday, next Tuesday, and then we won't go again for 3 weeks. Then I will taper down rrreeeeeaaalllyyy slowly again, so it will probably be 4-5 months until I'm back at my base dosage. But that argument is for another day. Tonight we are CELEBRATION ONLY!!!
Thanks again for all your love, prayers, support, meals, cards...I really can't express how much it means.
Yesterday & prayer request
For those of you who receive my e-mail updates this will be mostly repeat info.
Went to U of M yesterday for pheresis...went great! I mean great. I BARELY felt the needles (THAT in and of itself is miraculous!!) and the treatment went very smoothly. We DID use an old machine, and I did NOT feel like I was about to die the rest of the day. I actually felt good. I'm a little more tired today, but that's been par for the course in the past.
The docs are, however, concerned about the prednisone and hip pain. Apparently there is something called Avascular Necrosis of the hip that can occur with high doses or prolonged use of steroids (which prednisone is)....and they are concerned that the hip pain I am experiencing could be this necrosis. Treatment can range from complete bedrest to hip replacement. I had to have x-rays before I left the hospital yesterday, so we are waiting to see what's up. I'm copying an article about this condition so you know specifically what to pray for, and against. Thank you so much.
Because of the prednisone, also, my moods are pretty scattered. I keep saying that I am not going to worry, that I will be strong and courageous, because the Lord my God is with me... and then I have a moment of sheer panic. So please also pray that my mind will stay strong. THANK YOU.
Avascular Necrosis
What is it?
Avascular necrosis ("AVN") is a disease resulting from the temporary or permanent loss of the blood supply to the bones. Without blood, the bone and tissue surrounding it dies, which causes the bone to deteriorate, often leading to collapse of a joint. AVN is also known as osteonecrosis, ischemic necrosis, and aseptic necrosis, strikes both men and women and affects people of all ages. It is most common among people in their thirties and forties.
Who gets it?
There are common causes of AVN, such as fracture or dislocation of the femur (thigh bone) which results in injury to the blood circulation, leading to trauma-related AVN. Studies suggest that this type of AVN may develop in more than 20 percent of people who dislocate their hip joint.
In addition, thrombi or emboli (blood clots), inflammation, and damage to or narrowing of the arteries (from fat droplets) which block the blood supply to the hip joint cause AVN. Increased pressure within the bone also is associated with AVN - the pressure within the bone causes the blood vessels to narrow, making it hard for the vessels to deliver enough blood to the bone cells.
Studies now show that there is an increased incidence of AVN seen in people who chronically use steroids (such as prednisone) which are commonly used to treat diseases in which there is inflammation, such as systemic lupus erythematosus, rheumatoid arthritis, and vasculitis. Long-term, systemic (oral or intravenous) steroid use is associated with 35% of all cases of non-traumatic avascular necrosis. However, there is no known risk of AVN associated with the limited use of steroids. Doctors are not exactly sure why the use of steroids sometimes leads to AVN; they may interfere with the body’s ability to break down fatty substances which in turn build up and clog the blood vessels, causing them to narrow, which reduces the amount of blood that gets to the bone.
Excessive alcohol use and steroid use are two of the most common causes of non-traumatic AVN. In people who drink an excessive amount of alcohol, fatty substances may block blood vessels causing a decreased blood supply to the bones, resulting in AVN.
Other risk factors or conditions associated with non-traumatic AVN include Gaucher’s disease, pancreatitis, radiation treatments, chemotherapy, decompression disease, and blood disorders such as sickle cell disease.
What are the symptoms?
The area most frequently involved is the femoral head (hip joint); however, the elbow, knee, shoulder, wrist, and ankle can also be affected. The amount of disability that results from AVN depends on what part of the bone is affected, how large of an area is involved, and how effectively the bone rebuilds itself. The process of bone rebuilding takes place after an injury as well as during normal growth. Normally, bone continuously breaks down and rebuilds itself – old bone is torn away and reabsorbed, and replaced with new bone.
In the course of AVN, however, bone tissues break down faster than the body can repair them. In the early stages of AVN, patients may not have any symptoms. As the disease progresses, however, most patients experience joint pain - at first, only when putting weight on the affected joint, and then even when resting. If AVN progresses and the bone and surrounding joint surface collapse, pain may increase dramatically and may be severe enough to limit the patient’s range of motion in the affected joint. The period of time between the first symptoms and loss of joint function is different for each patient, ranging from several months to more than a year.
AVN may be present without any pain. In most cases, however, pain often develops dramatically, and increases in severity once the AVN has progressed. If the patient has hip pain, it is often due to flattening of the normally round femoral head, bone fragmentation, and eventual collapse of the femoral head.
Diagnosis
Your doctor will perform a complete physical examination and ask about your past medical history, including your health problems, and medication history. As with any other diseases, early diagnosis increases the chances of treatment success.
Your doctor will obtain an x-ray to help identify the cause of your joint pain, such as a fracture or arthritis. In the earliest stages of AVN, standard x-rays are often normal. If the x-ray is normal, you will probably have additional tests. A magnetic resonance image (MRI) is the most sensitive non-invasive method for diagnosis of AVN, and will show if there is any damage to the bone marrow, the bone itself, and the structures in and around the joint. In addition, MRI may show diseased areas that are not yet causing any symptoms.
In addition, your doctor will evaluate the opposite hip as well, because there is an 80% chance that the other hip is affected, even though you may have no symptoms at the time.
Treatment
The goal in treating avascular necrosis is to improve the patient’s use of the affected joint, stop further damage to the bone, and ensure bone and joint survival. Several treatments are available that can help prevent further bone and joint damage and reduce pain. To determine the most appropriate treatment, your doctor considers the following:
Your age
The stage of the disease – early or late
The location and amount of bone affected – a small or large area
The cause of AVN – with an ongoing cause such as steroid or alcohol use, treatment may not work unless use of the substance is stopped
If less than 15% of the femoral head is involved, AVN may resolve without any further treatment. Non-operative (conservative) treatment consists of partial weight bearing with the use of crutches for six weeks then re-evaluation by your orthopaedic surgeon. However, non-surgically managed cases most often show an 85-92% risk of progression of the disease, and for this reason, it is usually best to treat the hip surgically.
The shoulder and knee do better with conservative treatment than the hip does, and this is usually the treatment of choice for these joints. If AVN is diagnosed early, your doctor may treat you by limiting your activities or recommending that you use crutches. In some cases, reduced weight bearing can slow the damage caused by AVN and permit natural healing. When combined with medication to reduce pain, reduced weight bearing can be an effective way to avoid or delay surgery for some patients, however, most patients will eventually need surgery to repair the joint.
On the other hand, if greater than 50% of the femoral head progresses to collapse, it will ultimately require surgery. Surgical treatment involves one or a combination of four different procedures:
Core decompression is a procedure that involves drilling into the femoral neck (hip bone), through the necrotic (dead) area in order to relieve the pressure in the bone and to allow the bone to regrow in the area and heal on its own. This surgical procedure removes the inner layer of bone, which reduces pressure within the bone, increases blood flow to the bone, and allows more blood vessels to form. Core decompression works best in people who are in the earliest stages of avascular necrosis, often before the collapse of the joint. This procedure sometimes can reduce pain and slow the progression of bone and joint destruction in these patients. Patients are required to use crutches for 6 weeks following this procedure in order to prevent the risk of fracture.
Bone grafting is a procedure that involves taking a graft (segment of healthy bone) from the fibula (bone below the knee), and placing it into the core after core decompression. Bone grafting can either be non-vascularized (not using the blood vessels of the hip) or vascularized (using the blood vessels of the hip). In a vascularized procedure, the blood vessels of the graft are saved and are reattached to the blood vessels of the hip. The disadvantages of this procedure include a longer recovery period, less complete relief of pain than after total hip arthroplasty, and the potential of nerve injury to the calf in which the bone graft was taken. There is a lengthy recovery period after a bone graft, usually from 6 to 12 months.
Osteotomy. There are several types of osteotomies; however, all of these procedures attempt to shift the diseased femoral head by relocating some viable (living) cartilage in the weight bearing area so that you will have less pain when walking. After the procedure, your activities are very limited for 3 to 12 months.
Arthroplasty (total hip replacement) entails replacing the hip joint with an artificial femoral head and part of the femur with an artificial stem. The surgeon may, however, determine that the patient only needs replacement of the femoral head with an endoprosthesis (ball). A total hip replacement appears to provide the best results, and leads to complete or nearly complete relief of pain and relatively normal function in 90-95% of patients. With modern surgical techniques and devices, these artificial hips should continue to function for at least ten to fifteen years in the majority of patients.
In addition to the above surgical and non-surgical treatments, doctors and researchers are exploring the use of medications, electrical stimulation, and various therapies to increase the growth of new bone and blood vessels. These treatments are used experimentally, alone, and in combination with other treatments, such as osteotomy and core decompression.
Went to U of M yesterday for pheresis...went great! I mean great. I BARELY felt the needles (THAT in and of itself is miraculous!!) and the treatment went very smoothly. We DID use an old machine, and I did NOT feel like I was about to die the rest of the day. I actually felt good. I'm a little more tired today, but that's been par for the course in the past.
The docs are, however, concerned about the prednisone and hip pain. Apparently there is something called Avascular Necrosis of the hip that can occur with high doses or prolonged use of steroids (which prednisone is)....and they are concerned that the hip pain I am experiencing could be this necrosis. Treatment can range from complete bedrest to hip replacement. I had to have x-rays before I left the hospital yesterday, so we are waiting to see what's up. I'm copying an article about this condition so you know specifically what to pray for, and against. Thank you so much.
Because of the prednisone, also, my moods are pretty scattered. I keep saying that I am not going to worry, that I will be strong and courageous, because the Lord my God is with me... and then I have a moment of sheer panic. So please also pray that my mind will stay strong. THANK YOU.
Avascular Necrosis
What is it?
Avascular necrosis ("AVN") is a disease resulting from the temporary or permanent loss of the blood supply to the bones. Without blood, the bone and tissue surrounding it dies, which causes the bone to deteriorate, often leading to collapse of a joint. AVN is also known as osteonecrosis, ischemic necrosis, and aseptic necrosis, strikes both men and women and affects people of all ages. It is most common among people in their thirties and forties.
Who gets it?
There are common causes of AVN, such as fracture or dislocation of the femur (thigh bone) which results in injury to the blood circulation, leading to trauma-related AVN. Studies suggest that this type of AVN may develop in more than 20 percent of people who dislocate their hip joint.
In addition, thrombi or emboli (blood clots), inflammation, and damage to or narrowing of the arteries (from fat droplets) which block the blood supply to the hip joint cause AVN. Increased pressure within the bone also is associated with AVN - the pressure within the bone causes the blood vessels to narrow, making it hard for the vessels to deliver enough blood to the bone cells.
Studies now show that there is an increased incidence of AVN seen in people who chronically use steroids (such as prednisone) which are commonly used to treat diseases in which there is inflammation, such as systemic lupus erythematosus, rheumatoid arthritis, and vasculitis. Long-term, systemic (oral or intravenous) steroid use is associated with 35% of all cases of non-traumatic avascular necrosis. However, there is no known risk of AVN associated with the limited use of steroids. Doctors are not exactly sure why the use of steroids sometimes leads to AVN; they may interfere with the body’s ability to break down fatty substances which in turn build up and clog the blood vessels, causing them to narrow, which reduces the amount of blood that gets to the bone.
Excessive alcohol use and steroid use are two of the most common causes of non-traumatic AVN. In people who drink an excessive amount of alcohol, fatty substances may block blood vessels causing a decreased blood supply to the bones, resulting in AVN.
Other risk factors or conditions associated with non-traumatic AVN include Gaucher’s disease, pancreatitis, radiation treatments, chemotherapy, decompression disease, and blood disorders such as sickle cell disease.
What are the symptoms?
The area most frequently involved is the femoral head (hip joint); however, the elbow, knee, shoulder, wrist, and ankle can also be affected. The amount of disability that results from AVN depends on what part of the bone is affected, how large of an area is involved, and how effectively the bone rebuilds itself. The process of bone rebuilding takes place after an injury as well as during normal growth. Normally, bone continuously breaks down and rebuilds itself – old bone is torn away and reabsorbed, and replaced with new bone.
In the course of AVN, however, bone tissues break down faster than the body can repair them. In the early stages of AVN, patients may not have any symptoms. As the disease progresses, however, most patients experience joint pain - at first, only when putting weight on the affected joint, and then even when resting. If AVN progresses and the bone and surrounding joint surface collapse, pain may increase dramatically and may be severe enough to limit the patient’s range of motion in the affected joint. The period of time between the first symptoms and loss of joint function is different for each patient, ranging from several months to more than a year.
AVN may be present without any pain. In most cases, however, pain often develops dramatically, and increases in severity once the AVN has progressed. If the patient has hip pain, it is often due to flattening of the normally round femoral head, bone fragmentation, and eventual collapse of the femoral head.
Diagnosis
Your doctor will perform a complete physical examination and ask about your past medical history, including your health problems, and medication history. As with any other diseases, early diagnosis increases the chances of treatment success.
Your doctor will obtain an x-ray to help identify the cause of your joint pain, such as a fracture or arthritis. In the earliest stages of AVN, standard x-rays are often normal. If the x-ray is normal, you will probably have additional tests. A magnetic resonance image (MRI) is the most sensitive non-invasive method for diagnosis of AVN, and will show if there is any damage to the bone marrow, the bone itself, and the structures in and around the joint. In addition, MRI may show diseased areas that are not yet causing any symptoms.
In addition, your doctor will evaluate the opposite hip as well, because there is an 80% chance that the other hip is affected, even though you may have no symptoms at the time.
Treatment
The goal in treating avascular necrosis is to improve the patient’s use of the affected joint, stop further damage to the bone, and ensure bone and joint survival. Several treatments are available that can help prevent further bone and joint damage and reduce pain. To determine the most appropriate treatment, your doctor considers the following:
Your age
The stage of the disease – early or late
The location and amount of bone affected – a small or large area
The cause of AVN – with an ongoing cause such as steroid or alcohol use, treatment may not work unless use of the substance is stopped
If less than 15% of the femoral head is involved, AVN may resolve without any further treatment. Non-operative (conservative) treatment consists of partial weight bearing with the use of crutches for six weeks then re-evaluation by your orthopaedic surgeon. However, non-surgically managed cases most often show an 85-92% risk of progression of the disease, and for this reason, it is usually best to treat the hip surgically.
The shoulder and knee do better with conservative treatment than the hip does, and this is usually the treatment of choice for these joints. If AVN is diagnosed early, your doctor may treat you by limiting your activities or recommending that you use crutches. In some cases, reduced weight bearing can slow the damage caused by AVN and permit natural healing. When combined with medication to reduce pain, reduced weight bearing can be an effective way to avoid or delay surgery for some patients, however, most patients will eventually need surgery to repair the joint.
On the other hand, if greater than 50% of the femoral head progresses to collapse, it will ultimately require surgery. Surgical treatment involves one or a combination of four different procedures:
Core decompression is a procedure that involves drilling into the femoral neck (hip bone), through the necrotic (dead) area in order to relieve the pressure in the bone and to allow the bone to regrow in the area and heal on its own. This surgical procedure removes the inner layer of bone, which reduces pressure within the bone, increases blood flow to the bone, and allows more blood vessels to form. Core decompression works best in people who are in the earliest stages of avascular necrosis, often before the collapse of the joint. This procedure sometimes can reduce pain and slow the progression of bone and joint destruction in these patients. Patients are required to use crutches for 6 weeks following this procedure in order to prevent the risk of fracture.
Bone grafting is a procedure that involves taking a graft (segment of healthy bone) from the fibula (bone below the knee), and placing it into the core after core decompression. Bone grafting can either be non-vascularized (not using the blood vessels of the hip) or vascularized (using the blood vessels of the hip). In a vascularized procedure, the blood vessels of the graft are saved and are reattached to the blood vessels of the hip. The disadvantages of this procedure include a longer recovery period, less complete relief of pain than after total hip arthroplasty, and the potential of nerve injury to the calf in which the bone graft was taken. There is a lengthy recovery period after a bone graft, usually from 6 to 12 months.
Osteotomy. There are several types of osteotomies; however, all of these procedures attempt to shift the diseased femoral head by relocating some viable (living) cartilage in the weight bearing area so that you will have less pain when walking. After the procedure, your activities are very limited for 3 to 12 months.
Arthroplasty (total hip replacement) entails replacing the hip joint with an artificial femoral head and part of the femur with an artificial stem. The surgeon may, however, determine that the patient only needs replacement of the femoral head with an endoprosthesis (ball). A total hip replacement appears to provide the best results, and leads to complete or nearly complete relief of pain and relatively normal function in 90-95% of patients. With modern surgical techniques and devices, these artificial hips should continue to function for at least ten to fifteen years in the majority of patients.
In addition to the above surgical and non-surgical treatments, doctors and researchers are exploring the use of medications, electrical stimulation, and various therapies to increase the growth of new bone and blood vessels. These treatments are used experimentally, alone, and in combination with other treatments, such as osteotomy and core decompression.
Monday, July 6, 2009
Woot Woot!
I just have to say, I am so so so blessed to have the friends and family I do.
Because of your love, support, dedication, prayers....Because I wasn't stressed about what we were going to do for dinner or how I was going to handle Jacob.....I was able to have a WONDERFUL day yesterday. I keep saying it was a GOOD day, not so-so, but GOOD. But really, it was WONDERFUL!
I had what I will call a "golden hour"....we were all in the pool, and I was strong enough to be in there for about an hour, watching my husband and son interact, watching Jacob laugh and splash and have a blast and for once feel like I wasn't missing out on a thing! I even figured a way out to lean over a raft and I was actually SWIMMING...first time since I have had the trach. It felt fantastic...It felt......NORMAL.
Oh to feel like everyone else...even for an hour. I was just BLESSED. Thank you Jesus.
So. I have had NO neck pain for 2 days. My hip pain comes and goes inthe left hip. I have to be super careful how I walk or I wrench it and it hurts again. My right hip is fine. Eyes are back and forth. We are going to Ann Arbor for 4 treatments in the next 2 weeks, so they will be rough ones, but I'm CONVINCED that after that I WILL be strengthened, and I WILL feel better, and I WILL be enjoying the rest of my summer with my family and friends. So if ya'll can hang with me for a couple more weeks......
Speaking of family and friends: I love you. I can't imagine how we would have gotten through this without you. God has placed such precious people in my life...people who self-lessly give and give. People who bring food even when they have their own struggles. People who visit, people who help, people who call and send cards. I cannot TELL you how much you mean to me. God has blessed me through you in more ways than you can ever know. Please know how much we love you.
And to my husband: What a miracle you are. God gave you every gift you would need to be the perfect husband for me and the perfect father for Jacob. You are my rock here on this earth, and I can't imagine my life without you. You have been patient and long-suffering, and taking care of me in the best ways. You love and protect us and would give your life for us. You have given up a lot to take on me and my illness. Thank you for suporting me, for loving me, for taking care of me, and for calming me. You tell me it's going to be all right and I know it will be. I love you with all my heart.
Because of your love, support, dedication, prayers....Because I wasn't stressed about what we were going to do for dinner or how I was going to handle Jacob.....I was able to have a WONDERFUL day yesterday. I keep saying it was a GOOD day, not so-so, but GOOD. But really, it was WONDERFUL!
I had what I will call a "golden hour"....we were all in the pool, and I was strong enough to be in there for about an hour, watching my husband and son interact, watching Jacob laugh and splash and have a blast and for once feel like I wasn't missing out on a thing! I even figured a way out to lean over a raft and I was actually SWIMMING...first time since I have had the trach. It felt fantastic...It felt......NORMAL.
Oh to feel like everyone else...even for an hour. I was just BLESSED. Thank you Jesus.
So. I have had NO neck pain for 2 days. My hip pain comes and goes inthe left hip. I have to be super careful how I walk or I wrench it and it hurts again. My right hip is fine. Eyes are back and forth. We are going to Ann Arbor for 4 treatments in the next 2 weeks, so they will be rough ones, but I'm CONVINCED that after that I WILL be strengthened, and I WILL feel better, and I WILL be enjoying the rest of my summer with my family and friends. So if ya'll can hang with me for a couple more weeks......
Speaking of family and friends: I love you. I can't imagine how we would have gotten through this without you. God has placed such precious people in my life...people who self-lessly give and give. People who bring food even when they have their own struggles. People who visit, people who help, people who call and send cards. I cannot TELL you how much you mean to me. God has blessed me through you in more ways than you can ever know. Please know how much we love you.
And to my husband: What a miracle you are. God gave you every gift you would need to be the perfect husband for me and the perfect father for Jacob. You are my rock here on this earth, and I can't imagine my life without you. You have been patient and long-suffering, and taking care of me in the best ways. You love and protect us and would give your life for us. You have given up a lot to take on me and my illness. Thank you for suporting me, for loving me, for taking care of me, and for calming me. You tell me it's going to be all right and I know it will be. I love you with all my heart.
Saturday, July 4, 2009
Update (kinda long but check out the end)
Well, I've been gone for a while! I was actually admitted to the hospital in Ann Arbor (U of M) last Friday the 26th. I was given HUGE doses of IV Solu-Medrol (steroids) and felt like a million bucks...until they started wearing off. I thought the effects would last MUCH longer than they did, but it was very temporary. I did, however, get discharged a day early, but stayed overnight with Doug at the Med Inn because I still had pheresis the next day. I felt so good Sunday that we drove to Bronners in Frankenmuth, and had dinner out. I had a real, over night DATE with my husband! It was awesome.
But short lived. I had the pheresis Monday, and have been going downhill from there. Thursday I started getting horrible hip pain, could barely walk. Called the doc, upped my steroids to 30 a day to help with the pain. The steroids (prednisone) are helping though...but they do such horrible things to my body. I did NOT want to go up on them, but it's the only way to get rid of the joint pain. Now it will be months of tapering back down again. It's quite frustrating because I had lost 14 pounds on my new healthy eating plan, and prednisone packs on weight. When I was on 30 mgs a day when I was just out of the hospital originally, I gained 65 pounds. Prednisone makes you so hungry you could rip the bark off trees. And moody. And make your blood sugar go crazy. And gives you osteoporosis. But it can also save your life. It's SUCH a love/hate thing.
Ever since pheresis last Monday I have conutinued to go downhill...double vision, neck too weak to hold up my head, extreme weakness (like when I was originally hospitalized) in my arms and legs...Praise the LORD my breathing is okay...otherwise it's back to the hospital.
Anywho...today I have some improvement! Hallelujah!!!!! My neck isn't very sore at all (from holding my head up) my eyes are come and go, my hip pain is much better, and my arms and legs are, well, inconsistent, but not ALWAYS weak. YAY. But it's from the Prednisone.
SO...the doc wants me to have 3-4 MORE pheresis treatments boom, boom, boom. We are tentatively going Tues the 7th, Friday the 10th, Tuesday the 14th, and Thursday the 16th. They said it was highly unlikely that pheresis was ineffective since it has always worked before; my MG is simply out of control and needs more treatment than usual. I am SO THANKFUL to all of you who have helped and are helping my family!!!
We could not be getting through this without your prayers, support, and physical help. THANK you from the bottom of our hearts. If we can get through these next 2 weeks, I'm feeling like we're gonna be GOOD.
I saw this in a magazine a friend sent to me called HopeKeepers:
"Let us not underestimate how hard it is to
be compassionate. Compassion is hard
because it requires the inner disposition to
go with others to the place where they are
weak, vulnerable, lonely, and broken.
But this is not our spontaneous response to
suffering. What we desire most is to do
away with suffering by fleeing from it or
finding a quick cure for it....
This means first and foremost doing
something to show that our presence makes
a difference. And so we ignore our greataest
gift, which is our ability to enter into
solidarity with those who suffer.
Those who can sit in silence with their
fellowman, not knowing what to say bnut
knowing that they should be there, can
bring new life in a dying heart.
Those who are not afraid to hold a hand in
gratitude, to shed tears of grief and to let a
sigh of distress arise straight from the heart
can break through paralyzing boundaries
and witness the birth of a new fellowship,
the fellowship of the broken."
-Henri Nouwen
That last paragraph speaks volumes. I know some folks just don't know what to do. I know that it can feel akward and scary dealing with someone whom you normally see "OK" and to see them barely able to walk. But those "not knowing what to say but knowing that they should be there," well, it truly can bring new life. God bless you.
But short lived. I had the pheresis Monday, and have been going downhill from there. Thursday I started getting horrible hip pain, could barely walk. Called the doc, upped my steroids to 30 a day to help with the pain. The steroids (prednisone) are helping though...but they do such horrible things to my body. I did NOT want to go up on them, but it's the only way to get rid of the joint pain. Now it will be months of tapering back down again. It's quite frustrating because I had lost 14 pounds on my new healthy eating plan, and prednisone packs on weight. When I was on 30 mgs a day when I was just out of the hospital originally, I gained 65 pounds. Prednisone makes you so hungry you could rip the bark off trees. And moody. And make your blood sugar go crazy. And gives you osteoporosis. But it can also save your life. It's SUCH a love/hate thing.
Ever since pheresis last Monday I have conutinued to go downhill...double vision, neck too weak to hold up my head, extreme weakness (like when I was originally hospitalized) in my arms and legs...Praise the LORD my breathing is okay...otherwise it's back to the hospital.
Anywho...today I have some improvement! Hallelujah!!!!! My neck isn't very sore at all (from holding my head up) my eyes are come and go, my hip pain is much better, and my arms and legs are, well, inconsistent, but not ALWAYS weak. YAY. But it's from the Prednisone.
SO...the doc wants me to have 3-4 MORE pheresis treatments boom, boom, boom. We are tentatively going Tues the 7th, Friday the 10th, Tuesday the 14th, and Thursday the 16th. They said it was highly unlikely that pheresis was ineffective since it has always worked before; my MG is simply out of control and needs more treatment than usual. I am SO THANKFUL to all of you who have helped and are helping my family!!!
We could not be getting through this without your prayers, support, and physical help. THANK you from the bottom of our hearts. If we can get through these next 2 weeks, I'm feeling like we're gonna be GOOD.
I saw this in a magazine a friend sent to me called HopeKeepers:
"Let us not underestimate how hard it is to
be compassionate. Compassion is hard
because it requires the inner disposition to
go with others to the place where they are
weak, vulnerable, lonely, and broken.
But this is not our spontaneous response to
suffering. What we desire most is to do
away with suffering by fleeing from it or
finding a quick cure for it....
This means first and foremost doing
something to show that our presence makes
a difference. And so we ignore our greataest
gift, which is our ability to enter into
solidarity with those who suffer.
Those who can sit in silence with their
fellowman, not knowing what to say bnut
knowing that they should be there, can
bring new life in a dying heart.
Those who are not afraid to hold a hand in
gratitude, to shed tears of grief and to let a
sigh of distress arise straight from the heart
can break through paralyzing boundaries
and witness the birth of a new fellowship,
the fellowship of the broken."
-Henri Nouwen
That last paragraph speaks volumes. I know some folks just don't know what to do. I know that it can feel akward and scary dealing with someone whom you normally see "OK" and to see them barely able to walk. But those "not knowing what to say but knowing that they should be there," well, it truly can bring new life. God bless you.
Subscribe to:
Posts (Atom)
Love Changes Everything by Micah Berteau - A Book Review
If you're not familiar with the story of Hosea and Gomer in the Bible, it's really quite shocking. Here's my brief synopsis...
-
WELCOME SITSTAHS! I'm Kerri, and I am so excited and honored to be today's featured blogger! My dear friend Joanna introduced me to ... -
Hey everyone, This article was in my ezine from Rest Ministries called HopeKeepers. Many of you know some of the issues that churches today...
-
If you have made mistakes, there is always another chance for you.You may have a fresh start any moment you choose,for this thing we call ...