So today is the last day of National Myasthenia Gravis Awareness Month. And I want to tell you the BEST thing about having Myasthenia Gravis.
I have met some of the most amazing people I have ever met in my life. The people I am connected with in my MG groups are phenomenal people. I know, with them, I am immediately accepted. I am automatically understood.
In a world where I have been judged my whole life, you really can't imagine what that feels like. My MG friends, most of whom I consider sisters, get me. These women are so precious to me. (I'm sure some of the guys are precious too, but I'm closest with mostly some of the women.)
I have my cheerleader, my confidante, my prayer warrior, my always-makes-me-laugh-er, my FRIENDS. I am broken-hearted that they suffer with the same hideous disease as I do, but I don't know what I would do without these women in my life.
They are beautiful people. They encourage me. They inspire me. They lift me up, and never let me down. There is an amazing bond when you have something like MG in common...it's immediate, and it's life-long.
I started blogging because of MG, and I have met some life-long friends that way as well. MG has brought so many people into my life that have enriched it in a way I had never imagined.
So I guess I'm glad I have this wretched disease.
I hope those of you of whom I am speaking know who you are. There are too many to name, and I certainly don't want to leave anyone out. My brain (especially today with this migraine) is not working as well as it used to, and I wouldn't want to forget anyone. But there are some of you, you BETTER know who you are....I adore you. I appreciate you. I love you like my sisters. And I thank God for you all in my life.
Thursday, June 30, 2011
Wednesday, June 29, 2011
What You Might Not Know About MG
Myasthenia Gravis is called the "snowflake" disease because even though we all have many things in common, there are no two cases of MG that are exactly alike. So yup, I'm a flake.
There is no cure for MG.
Because there is no famous spokesperson for MG (i.e. Michael J. Fox for Parkinson's) there is not a ton of attention drawn to it. That's why I try to hit it pretty hard in June, National MG Awareness Month.
Taking medication for the MG to control the symptoms lowers your immune system to the point that if you get a common cold, you could easily end up in the hospital and die.
Those same medications can also lead to side effects (diabetes, osteoporosis, osteoarthritis, liver and kidney function problems) that then force you to need OTHER medications.
WITH insurance, I've already paid over $4000.00 in prescriptions this year. WITH insurance. Without, I can't imagine.
Many, many people have never heard of Myasthenia Gravis. I was one of them.
Many DOCTORS have never heard of Myasthenia Gravis. Especially non-neurologists, but even some of them. If you happen to find a doc that's NOT a neuro and knows about MG, you've kit the jackpot.
One in seven babies born to a Myasthenic mom will be born with transient neonatal myasthenia gravis. Jacob was. He was in the NICU for 35 days. Everything you read about this talks about AChR receptors, but I am not AChR+, I am MuSK+. Jacob was about worst case scenario for neonatal MG. Thank the Lord he will never have to deal with it again.
MG effects every facet of every area of your life: your friendships, your marriage, your employment, your ability to be independent, your ability to breathe, talk, swallow, chew, walk, stand, blow dry your hair, read or write for long periods of time, the ability to pursue hobbies that you once loved....it can kill, steal and destroy.
June is National Myasthenia Awareness Month. Please join me in praying for a cure. To learn more, or for donation information, go to www.myasthenia.org.
There is no cure for MG.
Because there is no famous spokesperson for MG (i.e. Michael J. Fox for Parkinson's) there is not a ton of attention drawn to it. That's why I try to hit it pretty hard in June, National MG Awareness Month.
Taking medication for the MG to control the symptoms lowers your immune system to the point that if you get a common cold, you could easily end up in the hospital and die.
Those same medications can also lead to side effects (diabetes, osteoporosis, osteoarthritis, liver and kidney function problems) that then force you to need OTHER medications.
WITH insurance, I've already paid over $4000.00 in prescriptions this year. WITH insurance. Without, I can't imagine.
Many, many people have never heard of Myasthenia Gravis. I was one of them.
Many DOCTORS have never heard of Myasthenia Gravis. Especially non-neurologists, but even some of them. If you happen to find a doc that's NOT a neuro and knows about MG, you've kit the jackpot.
One in seven babies born to a Myasthenic mom will be born with transient neonatal myasthenia gravis. Jacob was. He was in the NICU for 35 days. Everything you read about this talks about AChR receptors, but I am not AChR+, I am MuSK+. Jacob was about worst case scenario for neonatal MG. Thank the Lord he will never have to deal with it again.
MG effects every facet of every area of your life: your friendships, your marriage, your employment, your ability to be independent, your ability to breathe, talk, swallow, chew, walk, stand, blow dry your hair, read or write for long periods of time, the ability to pursue hobbies that you once loved....it can kill, steal and destroy.
June is National Myasthenia Awareness Month. Please join me in praying for a cure. To learn more, or for donation information, go to www.myasthenia.org.
Monday, June 27, 2011
My Heart is Heavy Today
Heavy hearts.
Broken relationships.
Friends in pain.
Health issues.
Loved ones who are hurting.
MG friends facing really tough times.
It's enough to break a person's heart.
It's enough to break my heart.
A very wise, godly friend of mine told me that she sees in me 2 distinct personality/spiritual giftings in me. One would be the "prophet"...not as in telling the future or prophesying, but speaking the truth. Telling it like it is. I would definitely agree. I never have been able to hold my tongue; especially when it comes to a sense of injustice.
The second one she was was mercy or compassion. Which I agree with as well. I mean, when I was little, I used to cry when OTHER kids got in trouble.
The funny thing is, these two characteristics are diametrically opposed to one another. Polar opposites. That basically means (and this is SO true) that there is many times an inner struggle between speaking the truth and tempering it with compassion.
Sometimes it's clear which trait is stronger: look at some of my former blog posts (like this one) where I don't really care who I offend if I get my point across.
Other times my heart just breaks for people going through tough stuff that I can't fix. Like my new MG friend Lisa, who has to get a temporary trach. My heart just aches for her.
I hate this disease. I don't know about y'all, but I'm SO ready for Jesus to come back. If you're NOT, you better e-mail me so we can fix that!
Broken relationships.
Friends in pain.
Health issues.
Loved ones who are hurting.
MG friends facing really tough times.
It's enough to break a person's heart.
It's enough to break my heart.
A very wise, godly friend of mine told me that she sees in me 2 distinct personality/spiritual giftings in me. One would be the "prophet"...not as in telling the future or prophesying, but speaking the truth. Telling it like it is. I would definitely agree. I never have been able to hold my tongue; especially when it comes to a sense of injustice.
The second one she was was mercy or compassion. Which I agree with as well. I mean, when I was little, I used to cry when OTHER kids got in trouble.
The funny thing is, these two characteristics are diametrically opposed to one another. Polar opposites. That basically means (and this is SO true) that there is many times an inner struggle between speaking the truth and tempering it with compassion.
Sometimes it's clear which trait is stronger: look at some of my former blog posts (like this one) where I don't really care who I offend if I get my point across.
Other times my heart just breaks for people going through tough stuff that I can't fix. Like my new MG friend Lisa, who has to get a temporary trach. My heart just aches for her.
I hate this disease. I don't know about y'all, but I'm SO ready for Jesus to come back. If you're NOT, you better e-mail me so we can fix that!
Sunday, June 26, 2011
Saturday, June 25, 2011
VIDEO!!!
Well, I still can't upload my video here, but I successfully got it on facebook, and youtube!!! Here's the link... PLEASE watch it!!!
http://youtu.be/R7XTcV5kGcA
http://youtu.be/R7XTcV5kGcA
Friday, June 24, 2011
Completely Bummed
I got a new webcam, finally figured it out, got it all working right, got a couple of videos recorded, and they supposedly upload, but they don't work. I've been working on this for HOURS....Total bummer.
I'm freakin' exhausted already. So I'm done for today.
Crap.
I'm freakin' exhausted already. So I'm done for today.
Crap.
Wednesday, June 22, 2011
The Potter and Clay Reflecting Him
Today we conclude the FIRST week of review of the marvelous study "Reflecting Him" by Carla McDougal. This is probably the biggest "aha" moment for me in a long time.
Let's pickup with our resident pottery expert Cynthia Bonner: "Every piece produced is unique and never exactly the same as the previous ones. All pottery creations are indeed individual creations...The potter shapes the vessel by applying pressure inside and/or outside the walls as he lifts. Remember that with every pressure action there is a reaction in the clay. The walls may move in or out depending on the pressure made by the potter's motion. He may throw a bowl, plate, vase, bottle, or pitcher; he may form a pedestal at the foot of a pot, a belly in the center or a neck at the rim. The pot's shape depends on the clay's capabilities and the potter's skills." (Reflecting Him page 24, emphasis mine).
Now a couple of Scriptures:
Let's pickup with our resident pottery expert Cynthia Bonner: "Every piece produced is unique and never exactly the same as the previous ones. All pottery creations are indeed individual creations...The potter shapes the vessel by applying pressure inside and/or outside the walls as he lifts. Remember that with every pressure action there is a reaction in the clay. The walls may move in or out depending on the pressure made by the potter's motion. He may throw a bowl, plate, vase, bottle, or pitcher; he may form a pedestal at the foot of a pot, a belly in the center or a neck at the rim. The pot's shape depends on the clay's capabilities and the potter's skills." (Reflecting Him page 24, emphasis mine).
Now a couple of Scriptures:
Isaiah 29:16
New Living Translation (NLT)
"How foolish can you be?
He is the Potter, and he is certainly greater than you, the clay!
Should the created thing say of the one who made it,
“He didn’t make me”?
Does a jar ever say,
“The potter who made me is stupid”?
Isaiah 45:9-10
New Living Translation (NLT)
9 “What sorrow awaits those who argue with their Creator.
Does a clay pot argue with its maker?
Does the clay dispute with the one who shapes it, saying,
‘Stop, you’re doing it wrong!’
Does the pot exclaim,
‘How clumsy can you be?’
10 How terrible it would be if a newborn baby said to its father,
‘Why was I born?’
or if it said to its mother,
‘Why did you make me this way?’”
I specifically chose the New Living Translation because one of the questions Carla asks in her study is in regard to the tone of the passages. I felt that the NLT practically answered the question by itself!
When I read the passages that way, I thought of all the times that I complain about myself. About having a difficult life sometimes. About having Myasthenia. About having a trach. About being short even!
And then I think, "Who do I think I am? Who am I to tell the Creator of the Universe, the God that split the Red Sea wide open...the Almighty Himself, who am I to tell him He made me badly?" How selfish!
Do I wish I was 5'9, and thin and healthy? Sometimes. But God's purpose for me is FAR more important that any desire I can have. If this is the condition in which He can use me the best for His glory, then so be it. I am the clay. I am the created, not the Creator.
I must move on to the last step of the pottery process. The fire. Do you remember in elementary school, making something out of clay and putting it in the kiln and just waiting with bated breath to see whose creation blew up? I certainly do. Thankfully it was never mine. Being 30 years ago, it was still socially acceptable to smoke, so lots of us Christian school kids made ashtrays. (Funny now when you look back!)
The firing process changes the entire look of the piece. It goes into the fire still kinda ugly. I mean, it's shaped, it's formed, it's got some color on it, but when you fire it up...THAT'S when the true beauty comes out. The shine. The glow. The radiance.
Carla says, "We must go through some fiery trials so others will see a beautifully finished product with a tag that reads, "Specifically made by the hands of Jesus."" (Reflecting Him page28)
Did you read that? Specifically. Exactly. Precisely. Obviously.
Made. Invented. Prepared. Created.
Friends, do you see? We were all made by a God who cared enough to sit at a potter's wheel and create us individually, uniquely, and perfectly for His purpose. And then, to make us our BEST, He allows us to go through fiery trials.
If it were not for the trial of MG, I would not be where I am in my life. I would not have met some of the most inspiring, amazing people fighting the same disease. I would not have my precious little boy, because I had every intention of adopting and never having my own children. I wouldn't be as strong as I am today. And I wouldn't be as grateful. Not nearly as grateful.
This study is amazing. This is only week ONE of ten. Don't worry, there won't be three posts about each week! This week was just so precious to me...how specific the pottery process really is, and how much time and energy and thought was put into creating only me. I sat on that potter's wheel, in the hands of My Maker. And I PRAY that I will never again resist who I am supposed to be, or complain that I am not something I wish I were. I am my Maker's intended creation. And that is a beautiful thing.
Tuesday, June 21, 2011
"Reflecting Him" The Potter Part 2
"This week we examined the potter's purpose for his or her clay and the importance of the clay staying mold-able throughout the shaping process." (Relfecting Him, page 18, italics mine)
Ouch. Obviously, I am the clay. What would happen if clay could somehow choose to become stone? If clay could (because the Creator gave it free will) choose to NOT be pliable?
It would NEVER become anything, let alone the unique piece of art it is supposed to become. So, you ask, how could I ever become unpliable? (All right, stop snickering).
Here comes my word-nerdiness: Pliable: Flexible. Elastic. Stretchable. Shapable. Moldable. Yielding. Willing. Compliant. Submissive. Obedient.
Ouch again. You see, if I, (the clay) cannot be these things, if I am unwilling to be flexible and stretchable and submissive (things that do NOT come easily), if I don't do that I am missing out on God's purpose for my life.
Stay with me here: "Sometimes during the pottery process, the wheel must be immobile to create exceptional character. Yet at other times the wheel must rotate quickly and with precision. The potter decides what to do, depending on each pot's purpose." (Reflecting Him, page 18, italics mine.)
So I have to ask myself if I am willing to be pliable. Am I consenting to be stretched to beyond what I think I can handle? Am I eager to let My Potter create what He wants? Am I content to relinquish all control? Am I willing to embrace Myasthenia Gravis as a "unique" quality of my pot? Am. I. Willing?
Are you?
Oy. If you picture the wheel as the circumstances in our lives (as Carla McDougal suggests in her study), there are times when life seems to be standing still. Possibly even passing you by. I have been, and still am in such a place. I believe my wheel may be ever so slightly starting to turn again, but the stillness can be a painful place. Then we have the times when we feel like life is spinning out of control. Remember this:
(In the words of Cynthia Bonner, on the importance of centering the clay just perfectly, and the spinning of the wheel)
"This involves the potter's full concentration and requires the weight of the potter's arm muscles. At this point, if not properly centered, the lump of clay can go flying into orbit as the wheel launches into action.... The mass of clay is penetrated to create a V-shaped opening, and then the piece is formed by lifting the pot's walls. The potter must maintain a firm and steady upward movement by locking his hands together.... Even though the wheel aids in establishing symmetry and precision, every piece produced is unique and never exactly the same as the previous ones." (emphasis mine)
Wow. I'm telling you, friends, I have been on that wheel when the piercing and gutting began. I remember going through an 8 year diagnostic process. I remember wondering if I would live or die. What I sometimes forgot is that God had His hands on me the entire time. He doesn't push pause. He doesn't get up to go grab a snack and leave me spinning aimlessly. He lifts me. He molds me. He sculpts me. He never leaves me. He has His eye on me. He is making me His unique creation.
If clay could feel, do you think it would enjoy the process? Not always. But sometimes it must just think, "What a ride."
Ouch. Obviously, I am the clay. What would happen if clay could somehow choose to become stone? If clay could (because the Creator gave it free will) choose to NOT be pliable?
It would NEVER become anything, let alone the unique piece of art it is supposed to become. So, you ask, how could I ever become unpliable? (All right, stop snickering).
Here comes my word-nerdiness: Pliable: Flexible. Elastic. Stretchable. Shapable. Moldable. Yielding. Willing. Compliant. Submissive. Obedient.
Ouch again. You see, if I, (the clay) cannot be these things, if I am unwilling to be flexible and stretchable and submissive (things that do NOT come easily), if I don't do that I am missing out on God's purpose for my life.
Stay with me here: "Sometimes during the pottery process, the wheel must be immobile to create exceptional character. Yet at other times the wheel must rotate quickly and with precision. The potter decides what to do, depending on each pot's purpose." (Reflecting Him, page 18, italics mine.)
So I have to ask myself if I am willing to be pliable. Am I consenting to be stretched to beyond what I think I can handle? Am I eager to let My Potter create what He wants? Am I content to relinquish all control? Am I willing to embrace Myasthenia Gravis as a "unique" quality of my pot? Am. I. Willing?
Are you?
Oy. If you picture the wheel as the circumstances in our lives (as Carla McDougal suggests in her study), there are times when life seems to be standing still. Possibly even passing you by. I have been, and still am in such a place. I believe my wheel may be ever so slightly starting to turn again, but the stillness can be a painful place. Then we have the times when we feel like life is spinning out of control. Remember this:
(In the words of Cynthia Bonner, on the importance of centering the clay just perfectly, and the spinning of the wheel)
"This involves the potter's full concentration and requires the weight of the potter's arm muscles. At this point, if not properly centered, the lump of clay can go flying into orbit as the wheel launches into action.... The mass of clay is penetrated to create a V-shaped opening, and then the piece is formed by lifting the pot's walls. The potter must maintain a firm and steady upward movement by locking his hands together.... Even though the wheel aids in establishing symmetry and precision, every piece produced is unique and never exactly the same as the previous ones." (emphasis mine)
Wow. I'm telling you, friends, I have been on that wheel when the piercing and gutting began. I remember going through an 8 year diagnostic process. I remember wondering if I would live or die. What I sometimes forgot is that God had His hands on me the entire time. He doesn't push pause. He doesn't get up to go grab a snack and leave me spinning aimlessly. He lifts me. He molds me. He sculpts me. He never leaves me. He has His eye on me. He is making me His unique creation.
If clay could feel, do you think it would enjoy the process? Not always. But sometimes it must just think, "What a ride."
Monday, June 20, 2011
"Reflecting Him" Review Part 1
I have the privilege of reviewing a Bible study called "Reflecting Him" by Carla McDougal. This is her first study written, although you would never know it! Week Two of this study has challenged me more than any single week of any single study I've ever done. In fact, this study is so amazing, I will be doing a series of reviews, because there is WAY too much to fit in one post.
There are literally dozens of references in the Bible to potters and clay. The most significant ones (to me) will be integrated in these reviews. I'm going to start with Isaiah 29:16. "You turn things upside down, as if the potter were thought to be like the clay! Shall what is formed say to Him who formed it, 'He did not make me?' Can the pot say of the potter, 'He knows nothing?'"
Ouch. For me, that was almost enough! I can't count the times I have thought "Why can't I just be normal, why can't I just be like that person, who has their health?" I've even thought "They don't even appreciate their health, why do they get to have perfect health?" Well, check out an expository of Romans 9:21: "Does not the potter have power over the clay, from the same lump to make one vessel for honor and another for dishonor?" (The NIV uses "some pottery for special purposes and some for common use?")
The words "power over" in this verse come from the word exasla in Greek. That means "the right to act, decide or dispose of one's property as one wishes." "The same lump" in Greek is furamatos, "that which is mixed or kneaded." (Reflecting Him pg 6).
Before we go further, I want to refer to the expert of the week in this study, Cynthia Bonner. She is a pottery specialist, and throughout this week, Carla McDougal refers to her to explain the real process of creating pieces of pottery.
"Mixing the clay and temper to form the prepared or ready-to-use clay is similar to kneading dough when you are making bread. Once mixed together, the clay will actually improve as it ages, but it can also be used right away....By applying pressure on the clay, the potter eliminates air bubbles that can cause problems down the road." (Cynthia Bonner, as quoted in Reflecting Him, page 14.)
So far this is what I've learned:
1. God is my Creator. He created me with a specific purpose in mind, just like a potter knows what he or she is going to make before he or she starts to fashion it.
2. God made me according to the purpose for which I have been called. Who am I to tell Him He made me incorrectly? Even before MG, I have always been exactly how God created me to be.
3. God must knead me to get out the air pockets so I don't disintegrate when I'm put into the fire. While this process is NOT enjoyable, it is necessary to become what God wants me to be.
I'll continue part two of the potter and the clay tomorrow...I think this is enough for one day!
About Carla
Carla McDougal is the founder of Reflective Life Ministri
es and Share Fair, an annual conference for connecting, equipping, and encouraging women in ministry. She speaks at women’s events, retreats, and conferences in the U.S. and internationally. Carla married her high school sweetheart, Fred, and they have four children ages 16 to 23 and live in Magnolia, Texas. Reflecting Him: Living for Jesus and Loving It (WinePress Publishing, 2010) is Carla’s first book, although she’s been involved in leading and teaching Bible studies for more than 20 years. Carla writes a Monday morning e-votional at her blog, Carla’s Corner.
Saturday, June 18, 2011
Updates
Okay.
I had an echocardiogram last Wednesday, and everything "seems" okay. I have to just wait and see. Which is like TORTURE to me. I shouldn't have asked any questions, because she said I have a leaky valve, but not which one, and told me the number, and a number for my pressures...but not which pressures...and everything overall looked OK. Partial information is worse than none. Now I'm going crazy trying to figure out what's what. And it's making me lose my mind. Slowly.
I also got my Shake-A-Lator VEST. It's bizarre. It reminds me of those old black and white TV shows where they show the people at the "fat farms" or "spa" or whatever with the belt around them that shakes them senseless! It's like going over a super bumpy road for 20 minutes. CRAZY. But it's already helping me get rid of stuff in my lungs. Now we just pray the insurance (MEDICARE) will cover its 80%, because it has a pretty steep pricetag.
I'm waiting to hear about a cough assist machine, and I have a pulmonary function test on the 29th. My goodness. Appointments like crazy! Then of course, I have my 3 plasmapheresis treatments July 6, 8 and 11, and thank the LORD two of my docs were willing to work me in on those days; one being Dr. Lovy, the best pulmonologist in the WORLD and the other is my endocrinologist, Janette, who is the BEST P.A. in the world!!! They are all at At. Mary's, which is an hour from here, so making a trip, especially for a 15 minute diabetic check up is out of the question with gas at $4.00 a gallon. So thanks so much to those two docs for helping us out!
Other than that....I never did get Jacob's cold all the way, HALLELUJAH, and today, I got up at 7:30, had breakfast (thank you hubby), my coffee, and then Doug took Jacob to "throw hay" or something like that. Everyone was so impressed with Jacob. How grown up he is for a 4 year old, how well he speaks, how well behaved he was...I guess I'm not doing such a bad job after all!
But while they were gone, I swept the mudroom AND stairs (with a BROOM!), sorted and washed 3 loads of laundry, did the dishes and did my 20 minute Shake-A-Lator treatment. GO ME!
Don't forget, June is National Myasthenia Gravis Awareness Month!
Stay tuned next week for the start of a series of reviews on Reflecting Him, a Bible study by Carla McDougal.
I had an echocardiogram last Wednesday, and everything "seems" okay. I have to just wait and see. Which is like TORTURE to me. I shouldn't have asked any questions, because she said I have a leaky valve, but not which one, and told me the number, and a number for my pressures...but not which pressures...and everything overall looked OK. Partial information is worse than none. Now I'm going crazy trying to figure out what's what. And it's making me lose my mind. Slowly.
I also got my Shake-A-Lator VEST. It's bizarre. It reminds me of those old black and white TV shows where they show the people at the "fat farms" or "spa" or whatever with the belt around them that shakes them senseless! It's like going over a super bumpy road for 20 minutes. CRAZY. But it's already helping me get rid of stuff in my lungs. Now we just pray the insurance (MEDICARE) will cover its 80%, because it has a pretty steep pricetag.
I'm waiting to hear about a cough assist machine, and I have a pulmonary function test on the 29th. My goodness. Appointments like crazy! Then of course, I have my 3 plasmapheresis treatments July 6, 8 and 11, and thank the LORD two of my docs were willing to work me in on those days; one being Dr. Lovy, the best pulmonologist in the WORLD and the other is my endocrinologist, Janette, who is the BEST P.A. in the world!!! They are all at At. Mary's, which is an hour from here, so making a trip, especially for a 15 minute diabetic check up is out of the question with gas at $4.00 a gallon. So thanks so much to those two docs for helping us out!
Other than that....I never did get Jacob's cold all the way, HALLELUJAH, and today, I got up at 7:30, had breakfast (thank you hubby), my coffee, and then Doug took Jacob to "throw hay" or something like that. Everyone was so impressed with Jacob. How grown up he is for a 4 year old, how well he speaks, how well behaved he was...I guess I'm not doing such a bad job after all!
But while they were gone, I swept the mudroom AND stairs (with a BROOM!), sorted and washed 3 loads of laundry, did the dishes and did my 20 minute Shake-A-Lator treatment. GO ME!
Don't forget, June is National Myasthenia Gravis Awareness Month!
Stay tuned next week for the start of a series of reviews on Reflecting Him, a Bible study by Carla McDougal.
Friday, June 17, 2011
More Random Letters
Dear Road Crew,
It's very kind of you to park every vehicle known to road construction RIGHT in front of my house so my dogs can go insane barking and frothing at the mouth while I am nursing a migraine. I can't tell you how lovely it is to smell burning tar through my open windows (which are now closed) and see you pouring those stupid little stones that just kick up and chip the paint on my car, all over my road. Would it KILL you to use ashphalt?
By the way, I love how you decided (right after you parked every vehicle known to road constuction known to man RIGHT in front of my house) to sit on your butts smoking cigarettes for 45 minutes in the shade of my catalpa trees 25 feet from my office window. Every time I looked out my window my blood pressure went higher.
And your buddies chose the shade of our maple trees on the other side of the house to sit on THEIR butts and smoke cigarettes for 45 minutes. There was no lunch being consumed. You just sat. And smoked. One of you laid on my lawn for a little snooze apparently. Takes big ones to do that, if you ask me.
I almost let my dogs out toscare the hell out of you greet you, but knowing my luck, I would get sued if they licked you or something.
Next time, PLEASE just go another 200 yards down the road to take your 45 smoke break.
Sincerely,
A Road-Crew-Stone-Chipping-Hater, Migraine-Nursing, Annoyed Tax Payer.
Dear Lord,
I appreciate your sense of humor. I really do. You know, transplanting this city girl to the country where the bugs are bigger than car tires and the strays more populous than the grains of sand on the seashore. And giving this germaphobe a child who will put anything is his mouth that shouldn't go in there, and nothing that should, who picks his nose til it bleeds and won't blow it to save his life. But the road crew this morning was a little over the top. Just sayin.
Sincerely,
Your Messed Up Kid That Is Thankful You Love Her Anyway
Dear University of Phoenix,
I swear if you call me one more time I'm going to call the harassment police. What part of "stop calling me" do you not understand? You are an institution of higher learning. I think you need to go back to remedial reading and have your hearing tested. Seriously, a minimum of FIVE calls a day, every day? I wouldn't go to your school now if YOU paid ME! I told you when I signed up to please communicate via e-mail because it's hard for me to talk on the phone sometimes, because of my trach. Oh, maybe you don't know what a trach is...Regardless, even though I asked to be contacted via e-mail, my phone started ringing TEN MINUTES after I hit "enter" on the computer. I told TWO of your people to stop calling me. I e-mailed you 5 days ago. I unsubscribed my e-mail today, and actually found a "live-chat" person that SAYS she fixed it and won't call anymore. I'm not holding my breath.
Sincerely,
Your Loss ofThousands of Dollars A Potential Student Because You Are Annoying And Can't Follow Directions
Dear Overall Medical/Insurance/Coding/Billing Personnel:
Pppphhhtttttttttttt.
Sincerely,
One Fed Up Sickie
It's very kind of you to park every vehicle known to road construction RIGHT in front of my house so my dogs can go insane barking and frothing at the mouth while I am nursing a migraine. I can't tell you how lovely it is to smell burning tar through my open windows (which are now closed) and see you pouring those stupid little stones that just kick up and chip the paint on my car, all over my road. Would it KILL you to use ashphalt?
By the way, I love how you decided (right after you parked every vehicle known to road constuction known to man RIGHT in front of my house) to sit on your butts smoking cigarettes for 45 minutes in the shade of my catalpa trees 25 feet from my office window. Every time I looked out my window my blood pressure went higher.
And your buddies chose the shade of our maple trees on the other side of the house to sit on THEIR butts and smoke cigarettes for 45 minutes. There was no lunch being consumed. You just sat. And smoked. One of you laid on my lawn for a little snooze apparently. Takes big ones to do that, if you ask me.
I almost let my dogs out to
Next time, PLEASE just go another 200 yards down the road to take your 45 smoke break.
Sincerely,
A Road-Crew-Stone-Chipping-Hater, Migraine-Nursing, Annoyed Tax Payer.
Dear Lord,
I appreciate your sense of humor. I really do. You know, transplanting this city girl to the country where the bugs are bigger than car tires and the strays more populous than the grains of sand on the seashore. And giving this germaphobe a child who will put anything is his mouth that shouldn't go in there, and nothing that should, who picks his nose til it bleeds and won't blow it to save his life. But the road crew this morning was a little over the top. Just sayin.
Sincerely,
Your Messed Up Kid That Is Thankful You Love Her Anyway
Dear University of Phoenix,
I swear if you call me one more time I'm going to call the harassment police. What part of "stop calling me" do you not understand? You are an institution of higher learning. I think you need to go back to remedial reading and have your hearing tested. Seriously, a minimum of FIVE calls a day, every day? I wouldn't go to your school now if YOU paid ME! I told you when I signed up to please communicate via e-mail because it's hard for me to talk on the phone sometimes, because of my trach. Oh, maybe you don't know what a trach is...Regardless, even though I asked to be contacted via e-mail, my phone started ringing TEN MINUTES after I hit "enter" on the computer. I told TWO of your people to stop calling me. I e-mailed you 5 days ago. I unsubscribed my e-mail today, and actually found a "live-chat" person that SAYS she fixed it and won't call anymore. I'm not holding my breath.
Sincerely,
Your Loss of
Dear Overall Medical/Insurance/Coding/Billing Personnel:
Pppphhhtttttttttttt.
Sincerely,
One Fed Up Sickie
Tuesday, June 14, 2011
Letter To God
Dear God,
I am not going to make it through this day without you. Yesterday was SUCH a long day with Doug home for a whole hour and a half. I'm just overwhelmed. There's too much to do. There's too much! I need encouragement today, Lord. I need help. You promise you'll never leave me or forsake me, that I'll never walk alone. I'm holding you to that, God.
Already this morning I had to deal with the possibility of not getting my vest. You know, the one that will shake my lungs and keep them clear. The lady called and everything seemed fine but then she called back and said I have to fill out these forms to file an appeal...and I haven't even gotten it yet!
I overslept. My bedroom is full of dog hair and dust. I have to go back upstairs to turn Jacob's music off, and vacuum....and the thought of climbing those stairs is overwhelming. Everything is overwhelming.
I was feeling so good, Lord, for which I am SO grateful. I know I'm on the right track...but then Doug works a 15 hour day and I have
bills to pay and
dogs to take care of and
appointments to make and
insurance to deal with and
medication to keep track of and
a house to maintain and
allergies to deal with and
a child that needs me and wants my attention and
meals to feed my child and
loved ones I'm concerned about and
other loved ones I'm so angry with and
Bible study and
homeschooling and
trying to take care of myself and
feeling so isolated and
exhausted and
worrying about tests coming up....
Oh Lord. Take my burdens today. There's just too much. Days like today overwhelm me. I need help, God. I need You, but I need someone with skin, too. Please give me the strength and peace of mind I need today and the rest of this week. It's going to be a long one.
Thanks.
I am not going to make it through this day without you. Yesterday was SUCH a long day with Doug home for a whole hour and a half. I'm just overwhelmed. There's too much to do. There's too much! I need encouragement today, Lord. I need help. You promise you'll never leave me or forsake me, that I'll never walk alone. I'm holding you to that, God.
Already this morning I had to deal with the possibility of not getting my vest. You know, the one that will shake my lungs and keep them clear. The lady called and everything seemed fine but then she called back and said I have to fill out these forms to file an appeal...and I haven't even gotten it yet!
I overslept. My bedroom is full of dog hair and dust. I have to go back upstairs to turn Jacob's music off, and vacuum....and the thought of climbing those stairs is overwhelming. Everything is overwhelming.
I was feeling so good, Lord, for which I am SO grateful. I know I'm on the right track...but then Doug works a 15 hour day and I have
bills to pay and
dogs to take care of and
appointments to make and
insurance to deal with and
medication to keep track of and
a house to maintain and
allergies to deal with and
a child that needs me and wants my attention and
meals to feed my child and
loved ones I'm concerned about and
other loved ones I'm so angry with and
Bible study and
homeschooling and
trying to take care of myself and
feeling so isolated and
exhausted and
worrying about tests coming up....
Oh Lord. Take my burdens today. There's just too much. Days like today overwhelm me. I need help, God. I need You, but I need someone with skin, too. Please give me the strength and peace of mind I need today and the rest of this week. It's going to be a long one.
Thanks.
Sunday, June 12, 2011
Well, At Least The Sun Is Out
Day two of feeling kinda yucky. I have been much worse, so that I am thankful that it's not worse. Jacob seems mostly unaffected except for his runny nose. I just feel kinda blah. Not much energy. A grim reminder that this disease is never really GONE.
June is National Myasthenia Gravis Awareness Month, as you know by now if you've read any of my posts lately. One thing that I really want people to understand: I was a germaphobe BEFORE MG kinda-sorta by choice and kinda-sorta by OCD. Now I am a germaphobe by necessity.
When you walk in my house, there is a bottle of hand sanitizer. I suppose some people may be offended, but this is why it's there: People with MG don't die from MG. They die from a cold. My first neurologist told me that, and I vaguely remember thinking, "My, how melodramatic!" But whether you think it's melodramatic or not, it's the truth.
I have to be careful. Very careful. Even when I feel fantastic, I can't let my guard down for one second. I tape antibacterial wipes with me. If I eat out anywhere, I wipe the table down. The top, the edges, and the seat. After I touch the menu, I clean my hands; or I wipe the menu down with the wipes. Need ketchup? Everybody and their brother has touched the bottle, so I have to clean my hands again.
If I ride in someone else's vehicle, I have to clean my hands after I touch the handles, especially on the inside. If I ask someone to come over, I have to make sure they are not sick, and their children aren't sick. You CAN spread germs from a sick person in your house whether or not you have symptoms.
It's scary to even have people over because they could be coming down with something and not know it. So you can live in fear, or you can do your best to prevent sickness. I do both. I kind of go back and forth. I'll be like, it's all good, come on over, then I'll get a cold, and I freak and seclude myself. That's why chronic illness is so isolating. I have to protect myself.
It boggles my mind that many people don't even think about germs. They don't really have to, because if they get a cold, they feel like crap for a while and then get over it. I don't have that luxury.
So I pray a lot, and do what I can. So if I ask you to wash your hands, use hand sanitizer, or ask you 3 times if you and all in your house are healthy, please don't be offended. It could be a matter of life and death for me.
June is National Myasthenia Gravis Awareness Month, as you know by now if you've read any of my posts lately. One thing that I really want people to understand: I was a germaphobe BEFORE MG kinda-sorta by choice and kinda-sorta by OCD. Now I am a germaphobe by necessity.
When you walk in my house, there is a bottle of hand sanitizer. I suppose some people may be offended, but this is why it's there: People with MG don't die from MG. They die from a cold. My first neurologist told me that, and I vaguely remember thinking, "My, how melodramatic!" But whether you think it's melodramatic or not, it's the truth.
I have to be careful. Very careful. Even when I feel fantastic, I can't let my guard down for one second. I tape antibacterial wipes with me. If I eat out anywhere, I wipe the table down. The top, the edges, and the seat. After I touch the menu, I clean my hands; or I wipe the menu down with the wipes. Need ketchup? Everybody and their brother has touched the bottle, so I have to clean my hands again.
If I ride in someone else's vehicle, I have to clean my hands after I touch the handles, especially on the inside. If I ask someone to come over, I have to make sure they are not sick, and their children aren't sick. You CAN spread germs from a sick person in your house whether or not you have symptoms.
It's scary to even have people over because they could be coming down with something and not know it. So you can live in fear, or you can do your best to prevent sickness. I do both. I kind of go back and forth. I'll be like, it's all good, come on over, then I'll get a cold, and I freak and seclude myself. That's why chronic illness is so isolating. I have to protect myself.
It boggles my mind that many people don't even think about germs. They don't really have to, because if they get a cold, they feel like crap for a while and then get over it. I don't have that luxury.
So I pray a lot, and do what I can. So if I ask you to wash your hands, use hand sanitizer, or ask you 3 times if you and all in your house are healthy, please don't be offended. It could be a matter of life and death for me.
Saturday, June 11, 2011
Blech
Jacob and I both woke up sneezing and runny nosed. I thought it was allergies, but methinks it's a cold. Stay tuned. I feel like doo-doo, so I'm not sure I will post or not tomorrow.
Friday, June 10, 2011
I'll Tell You What's Backward!
It's time for 5-minute Friday. Five minutes of just writing. The topic today is Backward.START
All I can tell you is I will TRY not to swear. I'll tell you what is backward. Backward is having an insurance salesman tell you that he will "hook you up", "Take care of you", "deal with any problems you have come up" and even give you MAGNETS with his name number and e-mail on them. Backward is then trying to deal with said insurance dude, who seriously has NO flippin' clue what he's doing. I know more about insurance and claims and copays and all that other lovely BS than this guy does....but he's been "doing this for 20 years."
Seriously? And who the heck have you been representing? Because I would have fired your BACKWARD butt a long long time ago. Talk about irritating.
So anyway. I deal directly with insurance. It's amazing that their website, that THEY tell you to go to instead of calling them on the phone because you can do "so much" on their member website...that their perfect little website is a joke and a half. Talk about backward! They show we have met our out of pocket deductible, and have actually over paid by $60.00. So I'm like, then why the heck am I still paying for all my prescriptions?
No one knows. So they'll "look into it." Mmmm-Hmmm. Whatever. I told them to let me speak to someone in the claims department so I can figure it out by myself. I was informed that "Our claims department doesn't speak with clients." Well they obviously don't do their jobs either! No wonder they don't want to talk to anyone.
It's amazing how stupid you can be and still have a job.
STOP
Now it's your turn!
1. Write for 5 minutes flat for pure unedited love of the written word.
2. Link back here and invite others to join in.
3. Get a little crazy with encouragement for the five minuter who linked up before you.
Hook up with the Gypsy Momma and play along.
Thursday, June 9, 2011
Two Choices
I got this in an e-mail this morning, and it goes perfectly with a short analogy I was going to write. It's a bit long, and you may have read it before, but humor me. And grab a tissue.
Of course. Now what if I crinkled it up and offered it to you. Still worth $20.00, right?
What if I dropped it on the floor, stepped on it, got it all dirty and maybe a little damp. So now it's a crumpled, damp, crinkled up mess. But...it's still worth $20.00, am I right? Would you still want it? Of course!
My point is this: we are not all crisp, clean, new $20.00 bills from the bank. Some of us are worn. Some of us may be a bit faded. Some of us are smudged with dirt, a little messy, less than perfect.
But we all have the same value.
Don't EVER let anyone tell you you are LESS THAN because you have an illness, disease, disability, whatever. Don't EVER let yourself feel LESS THAN. Because you are not. You are VALUABLE, just the way you are.
Two Choices
What would you do? My question is: Would you have made the same choice?
At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question:
“When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?”
The audience was stilled by the query.
The father continued. “I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.”
Then he told the following story:
“Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.
I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.'
Shay struggled over to the team's bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted.
In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three.
In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands.
In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat. At this juncture, do they let Shay bat and give away their chance to win the game?
Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball.
However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact.
The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.
The game would now be over.
The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game. Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates.
Everyone from the stands and both teams started yelling, 'Shay, run to first!
Run to first!'
Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.
Everyone yelled, 'Run to second, run to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball was the smallest guy on their team, and now had his first chance to be the hero for his team.
He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.
All were screaming, 'Shay, Shay, Shay, all the Way Shay'
Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third! Shay, run to third!'
As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!'
Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.
“That day”, said the father softly with tears now rolling down his face, “the boys from both teams helped bring a piece of true love and humanity into this world”.
Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!
We all have thousands of opportunities every single day to help realize the 'natural order of things.' So many seemingly trivial interactions between two people present us with a choice:
Do we pass along a little spark of love and humanity or do we pass up those opportunities and leave the world a little bit colder in the process?
A wise man once said every society is judged by how it treats it's least fortunate amongst them.
What came to mind this morning is an analogy you've probably heard before, but it bears repeating. If I had $20.00 to give you, crisp and clean from the bank, would you take it?
Of course. Now what if I crinkled it up and offered it to you. Still worth $20.00, right?
What if I dropped it on the floor, stepped on it, got it all dirty and maybe a little damp. So now it's a crumpled, damp, crinkled up mess. But...it's still worth $20.00, am I right? Would you still want it? Of course!
My point is this: we are not all crisp, clean, new $20.00 bills from the bank. Some of us are worn. Some of us may be a bit faded. Some of us are smudged with dirt, a little messy, less than perfect.
But we all have the same value.
Don't EVER let anyone tell you you are LESS THAN because you have an illness, disease, disability, whatever. Don't EVER let yourself feel LESS THAN. Because you are not. You are VALUABLE, just the way you are.
Wednesday, June 8, 2011
Going Back To School?
Just today I asked a few places for information about getting a Masters Degree in Psychology or Christian counseling. Within 10 minutes of filling stuff out, my phone rang three times. I'm not sure I like that, but I suppose we all have our jobs to do.
Speaking of jobs, I do some writing for advertisers. Ironically, today I'm writing for Walden University; someone I have not yet checked out. No matter where I go, I will have to apply for financial aid, because I don't have money to pay for school right now.
At WaldenU.edu there is much information about college scholarships. If YOU are looking to go back to school, use these links to help! (And wish me luck!)
Speaking of jobs, I do some writing for advertisers. Ironically, today I'm writing for Walden University; someone I have not yet checked out. No matter where I go, I will have to apply for financial aid, because I don't have money to pay for school right now.
At WaldenU.edu there is much information about college scholarships. If YOU are looking to go back to school, use these links to help! (And wish me luck!)
Tuesday, June 7, 2011
June Is National Myasthenia Awareness Month!
I have been dealing with this disease called MG for about 16 years now. I was not "officially" diagnosed until July of 2003, when a new test for a specific kind of MG (Musk+ MG or MMG) came out. I started having symptoms about 6 months after having chronically infected tonsils removed in 1995.
Many things happened to me that should have killed me. First, the carbon dioxide levels in my blood were at levels that should have required a ventilator, yet I was still working full time. By the time they realized this and put my on oxygen 24/7, I literally got high from the initial oxygen because my brain was so starved for it. It is unfathomable, except by the grace of God, that I did not have brain damage (no comments from the peanut gallery, please!) : )Then, while in the hospital, the first 10 days were touch and go. They were not sure I would survive. I contracted staph pneumonia (MRSA), and had to be intubated and removed from the ventilator if I was to survive. It was a long, uphill battle.
I became diabetic from the huge doses of steroids there were giving me to save my life, and was in a wheelchair when I left the hospital. I walked with a walker after that. I also came home on a feeding tube, because I was not strong enough to swallow yet.
The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:
*Double vision
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)*Temporarily absent breathing
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up)
*Poor posture
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly)
*Difficulty producing the right words when needed
*Difficulty chewing
*Fatigue
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip
I can honestly say I have or have had all of the symptoms. It is not fun. A crisis situation (like when I was hospitalized) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscle by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)
Before I was hospitalized, my right hand had atrophied so much it was curled up into my body, and I looked like a stroke victim. I had to prop my head up with my elbow on the table because I couldn't hold my head up.
Fast forward: Glory to God, I now have a brilliant, fascinating, perfectly healthy son, Jacob, who will be 5 in August. Having him was the most difficult thing I've ever done. One-third of myasthenic women actually IMPROVE during pregnancy, one-third stay the same and one-third get worse. Yup, you guessed it, I got worse. By my 4th month, I could no longer speak clearly. Because I was so high-risk (35, the MG, diabetic) when I started going to the doctor I had to go every 2 weeks. At 30 weeks I started going every week, and at 34 weeks, twice a week.
Jacob was born with transient (temporary) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5. He went home 5 weeks to the day he was born. I bawled every day having to leave him in that hospital...my only comfort was knowing that he would be fine, because as soon as MY antibodies worked out of his system he would be completely healthy. And is he ever! He is the picture of health. Thank you God!
For treatment, I take CellCept, which is actually an anti-rejection drug taken by organ transplant recipients. It lowers my hyper-immune system, and keeps some of the MG symptoms at bay. I also take Prednisone, which has the same purpose.I go to St. Mary's Hospital in Grand Rapids for plasmapheresis 3x a week every 5-6 weeks. During plasmapheresis, they put a needle in each arm, take the blood out through one, run it through a machine (basically a fancy centrifuge) which removes the plasma from my blood, add new, "clean" plasma, warm the blood back up, and put it back into the other arm.
For those of you who donate blood and plamsa, THANK YOU. You have literally saved my life. For those of you that haven't but are able, PLEASE donate. You can truly and completely save a life. Without plasmapheresis, I would not be alive.I have absolutely no doubts that God saved my life for a purpose. And if that purpose is simply to tell others that they can get through hard times, that's what I will do. I never thought I could have a child. I never thought I could raise a child. But trust me, "ALL things are possible for him who believes."
If you are interested in supporting Myasthnia Gravis research, you can check out the Myasthenia Gravis Foundation of America website at www.myasthenia.org
I would like to say one last thing: If you or someone you know has a chronic illness, you can do one of several things: first of all, pray for them. Being chronically ill is lonely, isolating and depressing. If you can't always "see" their illness (many times, other than the trach, I look perfectly normal) please don't assume they are crazy, or nothing is wrong with them. You have no idea the hell they may be going through. Secondly, and very importantly, please don't judge. We are not just fat, lazy, unmotivated people who park in handicapped parking because we can't waddle to the front door. We are, first and foremost, people. People like you, who are just a little different. People who are dealing with excruciating circumstances, and may not have the energy to walk to the car after a trip around the store.
Thank you for taking the time to read this, and please join me in praying for a cure.
Many things happened to me that should have killed me. First, the carbon dioxide levels in my blood were at levels that should have required a ventilator, yet I was still working full time. By the time they realized this and put my on oxygen 24/7, I literally got high from the initial oxygen because my brain was so starved for it. It is unfathomable, except by the grace of God, that I did not have brain damage (no comments from the peanut gallery, please!) : )Then, while in the hospital, the first 10 days were touch and go. They were not sure I would survive. I contracted staph pneumonia (MRSA), and had to be intubated and removed from the ventilator if I was to survive. It was a long, uphill battle.
I became diabetic from the huge doses of steroids there were giving me to save my life, and was in a wheelchair when I left the hospital. I walked with a walker after that. I also came home on a feeding tube, because I was not strong enough to swallow yet.
The kind of MG that I have, MuSK+, effects about 7 people out of a million. (Okay so I'm not one in a million...) Some of the symptoms are:
*Double vision
*Drooping or even closing of the eyelids from weakness
*Swallowing difficulties, frequent choking
*Weakness of the intercostal and diaphragmatic muscles, which means lying on the back is nearly impossible (if you want to breathe, anyway)
*Hoarseness and changes in voice
*Weakness or paralysis that worsens as the day progresses
*Facial paralysis (all of the muscles in my face were so slack everyone at work kept asking me why I was so angry...I just couldn't smile because none of the muscles worked anymore)*Temporarily absent breathing
*Sustained difficulty breathing
*Drooping head (as neck muscles are too weak to hold it up)
*Poor posture
*Difficulty climbing stairs
*Difficulty lifting objects
*Difficulty talking (slurring words, inability to enunciate clearly)
*Difficulty producing the right words when needed
*Difficulty chewing
*Fatigue
*Overall, generalized weakness
*Weak muscle tone
*Muscle pain (due to atrophy from not using muscles enough)
*Frequent clumsiness and poor balance
*Frequent dropping of items due to weak grip
I can honestly say I have or have had all of the symptoms. It is not fun. A crisis situation (like when I was hospitalized) can occur at any time. A person with MG may be fine when they get up in the morning, and collapse for "no" reason in the afternoon. I have actually fallen off the toilet because my leg muscles just gave out. You don't really think that you're using a lot of muscle by simply sitting on the toilet, but you'd be surprised! (You can laugh, it's funny NOW!)
Before I was hospitalized, my right hand had atrophied so much it was curled up into my body, and I looked like a stroke victim. I had to prop my head up with my elbow on the table because I couldn't hold my head up.
Fast forward: Glory to God, I now have a brilliant, fascinating, perfectly healthy son, Jacob, who will be 5 in August. Having him was the most difficult thing I've ever done. One-third of myasthenic women actually IMPROVE during pregnancy, one-third stay the same and one-third get worse. Yup, you guessed it, I got worse. By my 4th month, I could no longer speak clearly. Because I was so high-risk (35, the MG, diabetic) when I started going to the doctor I had to go every 2 weeks. At 30 weeks I started going every week, and at 34 weeks, twice a week.
Jacob was born with transient (temporary) neo-natal MG. He was on a vent for 3 weeks, and in the NICU for a total of 5. He went home 5 weeks to the day he was born. I bawled every day having to leave him in that hospital...my only comfort was knowing that he would be fine, because as soon as MY antibodies worked out of his system he would be completely healthy. And is he ever! He is the picture of health. Thank you God!
For treatment, I take CellCept, which is actually an anti-rejection drug taken by organ transplant recipients. It lowers my hyper-immune system, and keeps some of the MG symptoms at bay. I also take Prednisone, which has the same purpose.I go to St. Mary's Hospital in Grand Rapids for plasmapheresis 3x a week every 5-6 weeks. During plasmapheresis, they put a needle in each arm, take the blood out through one, run it through a machine (basically a fancy centrifuge) which removes the plasma from my blood, add new, "clean" plasma, warm the blood back up, and put it back into the other arm.
For those of you who donate blood and plamsa, THANK YOU. You have literally saved my life. For those of you that haven't but are able, PLEASE donate. You can truly and completely save a life. Without plasmapheresis, I would not be alive.I have absolutely no doubts that God saved my life for a purpose. And if that purpose is simply to tell others that they can get through hard times, that's what I will do. I never thought I could have a child. I never thought I could raise a child. But trust me, "ALL things are possible for him who believes."
If you are interested in supporting Myasthnia Gravis research, you can check out the Myasthenia Gravis Foundation of America website at www.myasthenia.org
I would like to say one last thing: If you or someone you know has a chronic illness, you can do one of several things: first of all, pray for them. Being chronically ill is lonely, isolating and depressing. If you can't always "see" their illness (many times, other than the trach, I look perfectly normal) please don't assume they are crazy, or nothing is wrong with them. You have no idea the hell they may be going through. Secondly, and very importantly, please don't judge. We are not just fat, lazy, unmotivated people who park in handicapped parking because we can't waddle to the front door. We are, first and foremost, people. People like you, who are just a little different. People who are dealing with excruciating circumstances, and may not have the energy to walk to the car after a trip around the store.
Thank you for taking the time to read this, and please join me in praying for a cure.
Monday, June 6, 2011
My Name Is...
Reposted from September 2009.
I am shocking.
I can hurt you.
I will devastate your life, and change it in ways you could never imagine.
I can be the worst thing to ever happen to you, OR
I can be the best thing to ever happen to you.
I might take away your ability to work,
or walk
or laugh
or breathe
or see
or think clearly
or even live.
My name is chronic illness.
I will damage the connection between your nerves and muscles.
I will effect your ability to speak,
to swallow
to walk without falling
to hold your own head up
to breathe on your own
to go out alone
to be independent
to live a "normal" life.
My name is myasthenia gravis.
I will save your life.
I will cause you more trouble.
I may make you gain weight.
I may make you grumpy
or tired
or weepy
or hungry
or sad.
I usually help more than I hurt, so you keep me.
I may make you feel trapped.
My name is medication.
I can save your life.
I can give you a reason to go on.
I can bring you back from the edge.
I can make life bearable.
I will never give up.
I will help you fight when you just don't want to.
I will help you go when you just want to stop.
My name is HOPE.
"I am the Way, the Truth and the Life.
I am Freedom.
I am Emmanuel.
I am the Prince of Peace.
I am the Healer.
I am Wonderful.
I am your Counselor.
I am your Savior.
My name is JESUS."
I am shocking.
I can hurt you.
I will devastate your life, and change it in ways you could never imagine.
I can be the worst thing to ever happen to you, OR
I can be the best thing to ever happen to you.
I might take away your ability to work,
or walk
or laugh
or breathe
or see
or think clearly
or even live.
My name is chronic illness.
I will damage the connection between your nerves and muscles.
I will effect your ability to speak,
to swallow
to walk without falling
to hold your own head up
to breathe on your own
to go out alone
to be independent
to live a "normal" life.
My name is myasthenia gravis.
I will save your life.
I will cause you more trouble.
I may make you gain weight.
I may make you grumpy
or tired
or weepy
or hungry
or sad.
I usually help more than I hurt, so you keep me.
I may make you feel trapped.
My name is medication.
I can save your life.
I can give you a reason to go on.
I can bring you back from the edge.
I can make life bearable.
I will never give up.
I will help you fight when you just don't want to.
I will help you go when you just want to stop.
My name is HOPE.
"I am the Way, the Truth and the Life.
I am Freedom.
I am Emmanuel.
I am the Prince of Peace.
I am the Healer.
I am Wonderful.
I am your Counselor.
I am your Savior.
My name is JESUS."
Sunday, June 5, 2011
We're Not Talking Thankful....
We're talking over-the-moon, pure, all-encompassing, infinite, shut-my-mouth HAPPY. Happy happy happy happy happy. I'm happy. I'M HAPPY!!!!
{If any one you remember the seagull in the Little Mermaid, where he grabs Sebastian (the little crab) and goes eyeball to eyeball and says, "Do you hear what I'm saying to you?!?!" and shakes him like crazy.....THAT'S how I'm writing this!}
I want to grab every single one of you and make you look at me eyeball to eyeball so I can say, "Do you hear what I'm saying???" I AM HAPPY!
Now there's a total difference between happiness and being joy. I can still have joy in a hospital bed, because I know that when the Good Lord is ready, He is coming back to take me up to heaven, and I will be perfect there. NOTHING takes my joy.
But happy is a whole different ballgame. I cannot say I have felt really, honestly, purely HAPPY like this in.....sadly, I can't remember when. I'm downright giddy.
* I slept 7 hours straight last night. I didn't wake up or get up once. Not even to go potty. If I did, I don't remember, which is just as good as not waking at all. Can I tell you the last time that happened? NOPE. Probably 1989 or something.
* Yesterday, I drove myself 45 miles to my mom's house where I got to see my mom and dad on their anniversary, my niece on her birthday, and both of my sisters and one great-niece (I hate saying that because a great aunt is a blue-haired old lady in my mind's eye) all in one day. AND it was almost 90 degrees there. AND I sat in the garage (garage sale, not some form of self-torture) for over an hour chatting before I wilted and had to go in. But then I made a quick recovery. I drove home MYSELF 3 1/2 hours later, and drove home without incident.
* When I got HOME, after resting for about an hour or so in the house with my feet up, I was able to go outside, down to the pond, to see my precious baby's tadpole collection. We have them in all stages you know. "Two-legs, four-legs, and hoppers." THEN I walked to the barn (with the van key so Doug could drive down and bring me back up to the house since I knew there was NO WAY I could get up the incline back to the house after being outside for 30 minutes in 95 degrees (Yes, I said 95!), right?) I even went into. the. barn. Yes, that part was temporary insanity. My barn and my basement are two places I'd rather not EVER go in. But Jacob wanted me to see him feed the cows, and Doug wanted me to see the hay he put up. {As I'm saying that I'm hearing my brother (who never reads my blog, A-HEM) laugh his fool head off.}
Well, you know what? I. Walked. Back. Up. To. The. House. I had to stop twice, but I did it. Then up the concrete stairs from the pit of hell up the door, and up the 7 steps into the house.
THEN after resting again I gave Jacob a bath!
SHUT.
UP.
Let me just TRY to put this in perspective for you "normal" people. Wait a minute, who do I know that's normal??? You HEALTHY people.
Having SIX days in a row, where I did pretty much everything I wanted to do, and MORE, then sleeping 7 hours straight last night, waking up at 6:13 A. freakin' M. with no headache, feeling great...the odds of that happening are about the same as you winning the lottery, getting hit by lightning and walking on the moon all in six days.
For me to do what has happened this week....It should have been impossible. It's BEEN impossible for SIX YEARS. SIX years. That's 2,190 days. GLORY TO GOD. GLORY!!!
I'm not saying this can continue...if fact, I need to settle my hiney down before I end up relapsing. But I'm not sure you can really understand what this feels like...I want to shout from the mountaintops. It's like I've found the holy grail of treatment timing, location, etc. I even cut back on my Prednisone from 5mg every day to 5, 2 1/2 every other day. May not sound like much, but even that much has already helped my blood sugar. Prednisone is the devil. If there was something worse I could think of than the devil, it would be prednisone.
Anyway. Thank you for allowing me to verbally hemorrhage. Praise God it's going to be another amazing day. I am so blessed.
{If any one you remember the seagull in the Little Mermaid, where he grabs Sebastian (the little crab) and goes eyeball to eyeball and says, "Do you hear what I'm saying to you?!?!" and shakes him like crazy.....THAT'S how I'm writing this!}
I want to grab every single one of you and make you look at me eyeball to eyeball so I can say, "Do you hear what I'm saying???" I AM HAPPY!
Now there's a total difference between happiness and being joy. I can still have joy in a hospital bed, because I know that when the Good Lord is ready, He is coming back to take me up to heaven, and I will be perfect there. NOTHING takes my joy.
But happy is a whole different ballgame. I cannot say I have felt really, honestly, purely HAPPY like this in.....sadly, I can't remember when. I'm downright giddy.
* I slept 7 hours straight last night. I didn't wake up or get up once. Not even to go potty. If I did, I don't remember, which is just as good as not waking at all. Can I tell you the last time that happened? NOPE. Probably 1989 or something.
* Yesterday, I drove myself 45 miles to my mom's house where I got to see my mom and dad on their anniversary, my niece on her birthday, and both of my sisters and one great-niece (I hate saying that because a great aunt is a blue-haired old lady in my mind's eye) all in one day. AND it was almost 90 degrees there. AND I sat in the garage (garage sale, not some form of self-torture) for over an hour chatting before I wilted and had to go in. But then I made a quick recovery. I drove home MYSELF 3 1/2 hours later, and drove home without incident.
* When I got HOME, after resting for about an hour or so in the house with my feet up, I was able to go outside, down to the pond, to see my precious baby's tadpole collection. We have them in all stages you know. "Two-legs, four-legs, and hoppers." THEN I walked to the barn (with the van key so Doug could drive down and bring me back up to the house since I knew there was NO WAY I could get up the incline back to the house after being outside for 30 minutes in 95 degrees (Yes, I said 95!), right?) I even went into. the. barn. Yes, that part was temporary insanity. My barn and my basement are two places I'd rather not EVER go in. But Jacob wanted me to see him feed the cows, and Doug wanted me to see the hay he put up. {As I'm saying that I'm hearing my brother (who never reads my blog, A-HEM) laugh his fool head off.}
Well, you know what? I. Walked. Back. Up. To. The. House. I had to stop twice, but I did it. Then up the concrete stairs from the pit of hell up the door, and up the 7 steps into the house.
THEN after resting again I gave Jacob a bath!
SHUT.
UP.
Let me just TRY to put this in perspective for you "normal" people. Wait a minute, who do I know that's normal??? You HEALTHY people.
Having SIX days in a row, where I did pretty much everything I wanted to do, and MORE, then sleeping 7 hours straight last night, waking up at 6:13 A. freakin' M. with no headache, feeling great...the odds of that happening are about the same as you winning the lottery, getting hit by lightning and walking on the moon all in six days.
For me to do what has happened this week....It should have been impossible. It's BEEN impossible for SIX YEARS. SIX years. That's 2,190 days. GLORY TO GOD. GLORY!!!
I'm not saying this can continue...if fact, I need to settle my hiney down before I end up relapsing. But I'm not sure you can really understand what this feels like...I want to shout from the mountaintops. It's like I've found the holy grail of treatment timing, location, etc. I even cut back on my Prednisone from 5mg every day to 5, 2 1/2 every other day. May not sound like much, but even that much has already helped my blood sugar. Prednisone is the devil. If there was something worse I could think of than the devil, it would be prednisone.
Anyway. Thank you for allowing me to verbally hemorrhage. Praise God it's going to be another amazing day. I am so blessed.
Saturday, June 4, 2011
Our Story Continues....
Deep inside, the woman knows she's NOT crazy. "How could I have made myself stop breathing while I was UNCONSCIOUS?" she asks.
These doctors send her home with anxiety medication and pain pills. They send her home to die.
Nine days later she is back at the ER of the University hospital unable to swallow. She tried taking her medication at home, but it came out her trach. She can barely breathe. Her facial muscles are completely paralyzed by the time she gets admitted to a room some 12 hours later. She can't even close her teeth together.
Providentially, it is a new calendar month, and the woman is blessed with doctors whose tenacity has thus far been unmatched. One very good doctor with kind brown eyes looks at her and says, "We WILL find out what's wrong with you."
The woman believes him.
Four days later, the doctor delivers on his promise. "We have it narrowed down to 2 things." The woman still cannot speak because of the trach, so she writes, "?"
The doctor with the kind brown eyes looks away for just a moment. He says, "You either have Myasthenia Gravis, which has been suspected, which is not curable but it is treatable. Or you have bulbar palsy. It is degenerative and terminal."
The 29 year old newlywed sits in shock as the words "degenerative and terminal" reverberate through her mind. She can't really wrap her mind around what is being said.
She can't catch her breath. She can't speak. Tears well in her eyes, and she tries to pray. No words form.
The doctor tells the woman that they will continue treating her for Myasthenia Gravis (MG), and if she continues to improve, that's likely what she has. If she does not, she has bulbar palsy.
The woman is discharged shortly before Christmas. Will this be her last one? No one can say.
She still has a feeding tube, a trach, and a broken heart.
As most of you have figured out by now, I am this woman.
These doctors send her home with anxiety medication and pain pills. They send her home to die.
Nine days later she is back at the ER of the University hospital unable to swallow. She tried taking her medication at home, but it came out her trach. She can barely breathe. Her facial muscles are completely paralyzed by the time she gets admitted to a room some 12 hours later. She can't even close her teeth together.
Providentially, it is a new calendar month, and the woman is blessed with doctors whose tenacity has thus far been unmatched. One very good doctor with kind brown eyes looks at her and says, "We WILL find out what's wrong with you."
The woman believes him.
Four days later, the doctor delivers on his promise. "We have it narrowed down to 2 things." The woman still cannot speak because of the trach, so she writes, "?"
The doctor with the kind brown eyes looks away for just a moment. He says, "You either have Myasthenia Gravis, which has been suspected, which is not curable but it is treatable. Or you have bulbar palsy. It is degenerative and terminal."
The 29 year old newlywed sits in shock as the words "degenerative and terminal" reverberate through her mind. She can't really wrap her mind around what is being said.
She can't catch her breath. She can't speak. Tears well in her eyes, and she tries to pray. No words form.
The doctor tells the woman that they will continue treating her for Myasthenia Gravis (MG), and if she continues to improve, that's likely what she has. If she does not, she has bulbar palsy.
The woman is discharged shortly before Christmas. Will this be her last one? No one can say.
She still has a feeding tube, a trach, and a broken heart.
As most of you have figured out by now, I am this woman.
Friday, June 3, 2011
Five-Minute Fridays
Okay....so I'm giving the "real" 5-Minute Friday thing a chance. If nothing else, you can use this to check out The Gypsy Momma. She is an extraordinary writer. So. The rules are simple. You write for five minutes on the topic that The Gypsy Momma gives you. No editing, no re-writing, no overthinking, just unadulterated writing. Then link up to her site, and give props to the person ahead of you.
Today's topic is.....
Every Day.....
START
Every day I wake up and I still have MG. I still have a disease that has a name, but no cure. It has a name, but it's not MY name. I am NOT my disease.
Every day I wake up and I see the sleepy blue eyes of my precious son and wonder: is today the day? Is today the day he will say he's tired of having a sick Mommy?
Every day I wonder what challenges will come. I wonder if my husband and I will have a fight over what I can and cannot do. I wonder how the weather will effect my health. I wonder if my medication will keep working.
Every day I thank God that I woke up, (well, to be completely frank, MOST days!) that I have another day on this planet with my family.
Every day I see my little boy get bigger and older and wiser and smarter and I feel sad and happy at the same time. I'm so thrilled he's growing and happy and healthy. But I will never be able to hold him in one arm and sit for hours holding him and just staring into his curious blue eyes. Eyes so blue you could get lost in them.
Every day is a new day. A new start. But yet for me it is somehow the same. I still have a disease that will never go away until God decides to heal me. Which I indeed know He will....it just doesn't mean it will be on this side of heaven. But I will be free one day. And that leads to Hope.
Every day I have Hope. I know that my Redeemer lives. I know that there is a God and He loves me and He can use anything, even a wretched disease for His glory.
Every day I Hope that I am a willing vessel that He can use to reach, encourage, support or inspire someone.
STOP
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