Chronic Illness Awareness Week is coming up. September 14-20 has been set aside to educate and inform people about chronic illness. One thing that I think everyone with a chronic illness will agree on is that it can be very isolating. Always having to cancel plans. Never being able to fully commit to something because your illness may rear its ugly head.
If it weren't for God, and the angels He has sent my way, I couldn't get through this. I can't imagine how those who don't know the Lord make it. I would have no hope. And without hope, I wouldn't survive. It's that simple. Take away my hope, take away my life.
Psalm 31
1 In you, O LORD, I have taken refuge;
let me never be put to shame;
deliver me in your righteousness.
2 Turn your ear to me,
come quickly to my rescue;
be my rock of refuge,
a strong fortress to save me.
3 Since you are my rock and my fortress,
for the sake of your name lead and guide me.
4 Free me from the trap that is set for me,
for you are my refuge.
5 Into your hands I commit my spirit;
redeem me, O LORD, the God of truth.
6 I hate those who cling to worthless idols;
I trust in the LORD.
7 I will be glad and rejoice in your love,
for you saw my affliction
and knew the anguish of my soul.
8 You have not handed me over to the enemy
but have set my feet in a spacious place.
9 Be merciful to me, O LORD, for I am in distress;
my eyes grow weak with sorrow,
my soul and my body with grief.
10 My life is consumed by anguish
and my years by groaning;
my strength fails because of my affliction,
and my bones grow weak.
11 Because of all my enemies,
I am the utter contempt of my neighbors;
I am a dread to my friends—
those who see me on the street flee from me.
12 I am forgotten by them as though I were dead;
I have become like broken pottery.
13 For I hear the slander of many;
there is terror on every side;
they conspire against me
and plot to take my life.
14 But I trust in you, O LORD;
I say, "You are my God."
15 My times are in your hands;
deliver me from my enemies
and from those who pursue me.
16 Let your face shine on your servant;
save me in your unfailing love.
17 Let me not be put to shame, O LORD,
for I have cried out to you;
but let the wicked be put to shame
and lie silent in the grave.
18 Let their lying lips be silenced,
for with pride and contempt
they speak arrogantly against the righteous.
19 How great is your goodness,
which you have stored up for those who fear you,
which you bestow in the sight of men
on those who take refuge in you.
20 In the shelter of your presence you hide them
from the intrigues of men;
in your dwelling you keep them safe
from accusing tongues.
21 Praise be to the LORD,
for he showed his wonderful love to me
when I was in a besieged city.
22 In my alarm I said,
"I am cut off from your sight!"
Yet you heard my cry for mercy
when I called to you for help.
23 Love the LORD, all his saints!
The LORD preserves the faithful,
but the proud he pays back in full.
24 Be strong and take heart,
all you who hope in the LORD.
Read back over verses 7-10. God sees. He knows. He understands. He loves you. He is still on the throne. He will set our feet in a spacious place. Our reply should be like David's in verse 14: "I trust in You. You are my God." It's not always easy, but it is true. God is good. All the time. It is His nature.
So then why do we suffer? That, my friends, is the age old question. We live in a fallen world. We live on a broken, dying planet, and illness and hurt and crime and pain all go with that. Is God still in control? Of course. He never said it would be easy, but He did say it would be WORTH it.
"I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." Romans 8:18
Not worth comparing. We compare everything, don't we? But our present sufferings won't even be worth comparing to the glory we will receive if we just hang in there.
You can do this.
Monday, August 31, 2009
Friday, August 28, 2009
Invisible Illness Avalanche
Okay, I started reading this back and it sounds like a big ol' whine fest. I truly didn't mean it to be that, so I'm writing this disclaimer at the beginning: I do not want pity; I am trying to educate folks on invisible illness and how to treat people who have it. I'm not angling for attention or "oh poor you." I would love your prayers and encouragement, but I don't want anyone feeling sorry for me. God has me in this position for a reason. So please keep that in mind as you read.
The beauty of invisible illness. Chronic illness. Autoimmune Disease. Any or all of the above. It's like an avalanche. It picks up other health issues like an avalanche crashing down the side of a huge mountain picks up more snow. This is just MY example of how it worked:
It all started with chronic tonsilitis. I had tonsilitis 3 times in one summer when I was 14. Did the doctor take them out? No. Had tonsilitis several times a year thereafter, until I finally went to a doc (when I was 25) who looked at me, sent me to an ENT, who said, these things have to come out NOW. They were chronically infected. Meaning all the time. My antibodies were so ramped up that when the tonsils came out, all the antibodies had to go somewhere, and instead of just going away, they started attacking my own nerves and muscles. (Thus the auto in autoimmune disease).
So began the MG. (And phase one of the avalanche).
Then, after being hospitalized, and almost dying, I got trached to get off the vent and get rid of my staph pneumonia. (Gathering momentum).
After being in the hospital and on huge doses of steroids, as well as going home on a high maintenance dose of steroids, I became diabetic. (Anyone getting cold??)
Since autoimmune disease tend to run in streaks, I have also been blessed with fibromyalgia. Now, if you've never experienced what feels like a hot ice pick stabbing into a muscle when someone BARELY touches you, you are missing out on fibro pain. The beauty of it is, it lasts for about 5 minutes. It's FANTASTIC when your 3 year old uses you for a jungle gym. (I'm hearing a realllly loud rumbling sound and the earth is starting to shake!)
Because of the amount of time I have been on steroids, (9 years now) I have developed osteoporosis. At the ripe old age of 38! Whoo-hoo! I've also got some reactive arthritis due to going up and down on the prednisone (steroids). (What is that mountain of white sliding towards us??)
Finally, well for this post, I am having hip pain again, and would really appreciate your prayers on this. My neuro. told me if my hip pain didn't completely go away, they need to do an MRI, as the avascular necrosis of the hip (thank you steroids) can "hide" on an x-ray. Some of you may recall that I had hip x-rays not too long ago, and they looked good. But, like Dr. Teener says, it is possible the necrosis is hiding its lovely little self. So I'm a little nervous, and just praying it's arthritis from the rain or something. I guess I will e-mail him and see what he says, but as some of you may recall, and MRI under sedation started this whole journey, so I'm not terribly anxious to have another one.
My point of all this is: Sometimes people have a LOT more going on than you may think. Most people look at me and think, oh, she has a trach, she must have had throat cancer or something. Other than that, she cleans up pretty well. The truth of the matter is, I may have used up all my effort and energy to make myself presentable to go out in public and the wrong word could make me crumple up into the ugly cry. Ya never know.
Just remember that surface is exactly that: surface. There may be a riptide under that calm pool you're seeing. There may be hurting soul under that brash exterior. There may be someone in need of a word of encouragement. Even if you don't know what to say, just be there. Sometimes you don't need words, you just need to know that there ARE people out there who care what's happening to you. Please don't ignore us because you don't know what to say or do. Just tell us you don't know what to say or do, but then STAY. Don't run because you're uncomfortable. We're uncomfortable too, and sometimes just need someone to be there and listen.
The beauty of invisible illness. Chronic illness. Autoimmune Disease. Any or all of the above. It's like an avalanche. It picks up other health issues like an avalanche crashing down the side of a huge mountain picks up more snow. This is just MY example of how it worked:
It all started with chronic tonsilitis. I had tonsilitis 3 times in one summer when I was 14. Did the doctor take them out? No. Had tonsilitis several times a year thereafter, until I finally went to a doc (when I was 25) who looked at me, sent me to an ENT, who said, these things have to come out NOW. They were chronically infected. Meaning all the time. My antibodies were so ramped up that when the tonsils came out, all the antibodies had to go somewhere, and instead of just going away, they started attacking my own nerves and muscles. (Thus the auto in autoimmune disease).
So began the MG. (And phase one of the avalanche).
Then, after being hospitalized, and almost dying, I got trached to get off the vent and get rid of my staph pneumonia. (Gathering momentum).
After being in the hospital and on huge doses of steroids, as well as going home on a high maintenance dose of steroids, I became diabetic. (Anyone getting cold??)
Since autoimmune disease tend to run in streaks, I have also been blessed with fibromyalgia. Now, if you've never experienced what feels like a hot ice pick stabbing into a muscle when someone BARELY touches you, you are missing out on fibro pain. The beauty of it is, it lasts for about 5 minutes. It's FANTASTIC when your 3 year old uses you for a jungle gym. (I'm hearing a realllly loud rumbling sound and the earth is starting to shake!)
Because of the amount of time I have been on steroids, (9 years now) I have developed osteoporosis. At the ripe old age of 38! Whoo-hoo! I've also got some reactive arthritis due to going up and down on the prednisone (steroids). (What is that mountain of white sliding towards us??)
Finally, well for this post, I am having hip pain again, and would really appreciate your prayers on this. My neuro. told me if my hip pain didn't completely go away, they need to do an MRI, as the avascular necrosis of the hip (thank you steroids) can "hide" on an x-ray. Some of you may recall that I had hip x-rays not too long ago, and they looked good. But, like Dr. Teener says, it is possible the necrosis is hiding its lovely little self. So I'm a little nervous, and just praying it's arthritis from the rain or something. I guess I will e-mail him and see what he says, but as some of you may recall, and MRI under sedation started this whole journey, so I'm not terribly anxious to have another one.
My point of all this is: Sometimes people have a LOT more going on than you may think. Most people look at me and think, oh, she has a trach, she must have had throat cancer or something. Other than that, she cleans up pretty well. The truth of the matter is, I may have used up all my effort and energy to make myself presentable to go out in public and the wrong word could make me crumple up into the ugly cry. Ya never know.
Just remember that surface is exactly that: surface. There may be a riptide under that calm pool you're seeing. There may be hurting soul under that brash exterior. There may be someone in need of a word of encouragement. Even if you don't know what to say, just be there. Sometimes you don't need words, you just need to know that there ARE people out there who care what's happening to you. Please don't ignore us because you don't know what to say or do. Just tell us you don't know what to say or do, but then STAY. Don't run because you're uncomfortable. We're uncomfortable too, and sometimes just need someone to be there and listen.
Wednesday, August 26, 2009
Happy Aniversary!!
Today I am blessed to celebrate nine years of marriage to my wonderful, handsome, God-fearing, supportive, talented husband Doug. So this is for you, honey. I love you with all of my heart, “forever, and ever and always…”
I knew on our very first date that I was going to marry you. You were so “together.” So chivalrous. So intelligent, and funny. So interesting. So mature. So UN-like any other guy I had ever dated. You were a Christian, most importantly of all, and you had a great job and your own home. You knew what you wanted out of life, and weren’t afraid to get it. It seems like so long ago, and at the same time, it seems like yesterday.
I remember coming home from Chicago that weekend with the stuffed blue fish. I remember you later telling me that’s when YOU knew you were going to marry ME. Thank God for stuffed blue fish!
It’s been a journey, hasn’t it? Making the mutual decision that I needed to quit my job because of my health. Going into the hospital 6 weeks after we eloped for a simple MRI and ending up on a helicopter to U of M and not coming out for over a month. Going back to Ann Arbor less than 10 days later, half dead. I was so upset that I wasn’t going to be able to have our big church wedding that coming February like we had planned.
When the doctors told us that I had one of two diseases, neither of which were curable, one of which was degenerative and terminal…I have to be honest with you. I think 80% of men who had been married for the 13 weeks we had been would have cut and run. You certainly didn’t sign up for taking care of an invalid at the ripe old age of 29. You didn’t know I would be disabled, probably for the rest of my life. You didn’t even know at that point if I was going to live. And yet, you just stood by my side, holding my hand, and making me love you more and more every second.
You slept on the couch for six months while I was in the hospital bed in the living room…waking up several times a night to take care of me…to suction my trach, reset my breathing machine. My heart is so full right now I can hardly breathe. You are one of a kind, honey, and I pray I never take that for granted.
The day of our big church wedding one day before our first wedding anniversary was the happiest day of my life. I know we were already married, but I had been so looking forward to the big to-do. The big dress, the flowers, you at the end of that aisle, the big party…the huge celebration of LIFE.
You are the biggest answer to prayer that I have ever seen in my life. Without either of us knowing, God was preparing you for every skill you would need to be my husband… and then some! From decorating my trach band for the wedding so it would match my dress, to rigging up my tube feeding with a fishing pole, to fixing my suction machine with an earring wire in the middle of the night! You are McGuyver and Daniel Boone all rolled into one. Truly my knight in shining armor.
So much has happened since then. Ups and downs, ins and outs. Not knowing from one minute to the next how my health would affect any situation we encountered. You handled it like a champ. You still do. You’re my rock. You keep me sane. You help me hang on to hope when I just don’t want to take another step.
Thank you for putting up with my disease. Thank you for recognizing I am not JUST a disease. Thank you for being a wonderful husband and father. Thank you for loving me just as I am.
I love you so much. I love you more every day, every month, every year that goes by. You are my best friend, and I can’t wait to spend every day of the rest of my life loving you.
Sonnet 116 William Shakespeare
Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no, it is an ever-fixèd mark
That looks on tempests and is never shaken;
It is the star to every wand'ring bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.
I knew on our very first date that I was going to marry you. You were so “together.” So chivalrous. So intelligent, and funny. So interesting. So mature. So UN-like any other guy I had ever dated. You were a Christian, most importantly of all, and you had a great job and your own home. You knew what you wanted out of life, and weren’t afraid to get it. It seems like so long ago, and at the same time, it seems like yesterday.
I remember coming home from Chicago that weekend with the stuffed blue fish. I remember you later telling me that’s when YOU knew you were going to marry ME. Thank God for stuffed blue fish!
It’s been a journey, hasn’t it? Making the mutual decision that I needed to quit my job because of my health. Going into the hospital 6 weeks after we eloped for a simple MRI and ending up on a helicopter to U of M and not coming out for over a month. Going back to Ann Arbor less than 10 days later, half dead. I was so upset that I wasn’t going to be able to have our big church wedding that coming February like we had planned.
When the doctors told us that I had one of two diseases, neither of which were curable, one of which was degenerative and terminal…I have to be honest with you. I think 80% of men who had been married for the 13 weeks we had been would have cut and run. You certainly didn’t sign up for taking care of an invalid at the ripe old age of 29. You didn’t know I would be disabled, probably for the rest of my life. You didn’t even know at that point if I was going to live. And yet, you just stood by my side, holding my hand, and making me love you more and more every second.
You slept on the couch for six months while I was in the hospital bed in the living room…waking up several times a night to take care of me…to suction my trach, reset my breathing machine. My heart is so full right now I can hardly breathe. You are one of a kind, honey, and I pray I never take that for granted.
The day of our big church wedding one day before our first wedding anniversary was the happiest day of my life. I know we were already married, but I had been so looking forward to the big to-do. The big dress, the flowers, you at the end of that aisle, the big party…the huge celebration of LIFE.
You are the biggest answer to prayer that I have ever seen in my life. Without either of us knowing, God was preparing you for every skill you would need to be my husband… and then some! From decorating my trach band for the wedding so it would match my dress, to rigging up my tube feeding with a fishing pole, to fixing my suction machine with an earring wire in the middle of the night! You are McGuyver and Daniel Boone all rolled into one. Truly my knight in shining armor.
So much has happened since then. Ups and downs, ins and outs. Not knowing from one minute to the next how my health would affect any situation we encountered. You handled it like a champ. You still do. You’re my rock. You keep me sane. You help me hang on to hope when I just don’t want to take another step.
Thank you for putting up with my disease. Thank you for recognizing I am not JUST a disease. Thank you for being a wonderful husband and father. Thank you for loving me just as I am.
I love you so much. I love you more every day, every month, every year that goes by. You are my best friend, and I can’t wait to spend every day of the rest of my life loving you.
Sonnet 116 William Shakespeare
Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove.
O no, it is an ever-fixèd mark
That looks on tempests and is never shaken;
It is the star to every wand'ring bark,
Whose worth's unknown, although his height be taken.
Love's not Time's fool, though rosy lips and cheeks
Within his bending sickle's compass come;
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
If this be error and upon me proved,
I never writ, nor no man ever loved.
Monday, August 24, 2009
Gone Fishin'
Yesterday we went fishing. It was a little chilly sometimes, but a LOT better than last week's blistering 95 degrees and 80% humidity. The fish were biting much better too. Last week I had to stay out on the lake until I caught ONE fish. This week I caught the first one...but JACOB caught the biggest one!
A "loud mouth bass!" It was 2 inches too short so we had to throw it back...I was bummed. BUT, we did catch a BUNCH of really nice bluegill...6-7 inches. Jacob kept "petting" them and picking them up out of the live well. It was hilarious. He's SO 3. He'd be playing with his trucks and smashing Cheerios on the deck one minute, then Daddy would tell him he had a fish on his pole, and he'd drop everything and book over there, all business. He reels the fish in by himself, and then Daddy grabs the landing net to scoop them up. He loves it. He has seen sport fishing on TV, so he pulls his fishing pole way up and then dips it forward and reels like crazy, then puuulllls it back...it's completely hysterical. He's such a ham!
Saturday, August 22, 2009
True Character
I wonder why we think we can change without God's help. I wonder how we EVER think we can change others. I mean, we can mold our children, and we can mentor young adults, but once a person is who they have become, well, that's it. Unless God moves. And I ain't God, I can tell ya that much! And He ain't movin'. I know most of the time the Mov-ee needs to want to move, but we're talking about God, the mountain Mover!
I can't seem to get over the fact that I continue to believe that people will do what they say they will do. (I truly can't be the only one out there, can I???) GOD does what He says He will do...I have to get that through my thick head. I cannot depend on the word of another. I know people get caught up in their lives (Oh, before I go any further, I'm not talking about anyone who reads this blog, so don't send me e-mails of panic) and their focus can get myopic. I know my own focus can be myopic, especially when I'm not having such a good day (like today).
I know I'm not the only person on the planet who means what she says. I also say what I mean. So if I hear a crappy comment from someone directed toward me, I'm going to believe that's how they really feel...after all, the gospel of Matthew tells us that "out of the abundance of the heart, the man speaketh."
Lord knows I'm not perfect. Lord knows I've let people down. It's just the time and time again from someone who should be the soft place to fall. I mean, I really am learning that God is the ONLY One who can meet all my needs. I get that. But it would be nice to have a little compassion and understanding here on earth as well. Call me naive, but I thought that people who loved each other were supposed to be nice to each other. Why is that so much to ask? So much of this just does not seem like rocket science to me, and yet....is honesty with love THAT difficult? Is being a man or woman of character just SO impossible today? Is doing what you say you will do a foreign concept? It's like, if you don't mean it, just shut up. Don't tell me you'll do or be or are something you won't or aren't or can't. Just don't.
Thank God I know Who holds my future. I don't know what's going to happen, but I KNOW that "He who began a good work in me WILL carry it on to completion." Don't know how, but I've learned long ago that the how is so far out of your control ya might as well stop worrying about it. If God gives you a peek, great. If not, hang on for the ride.
I can't seem to get over the fact that I continue to believe that people will do what they say they will do. (I truly can't be the only one out there, can I???) GOD does what He says He will do...I have to get that through my thick head. I cannot depend on the word of another. I know people get caught up in their lives (Oh, before I go any further, I'm not talking about anyone who reads this blog, so don't send me e-mails of panic) and their focus can get myopic. I know my own focus can be myopic, especially when I'm not having such a good day (like today).
I know I'm not the only person on the planet who means what she says. I also say what I mean. So if I hear a crappy comment from someone directed toward me, I'm going to believe that's how they really feel...after all, the gospel of Matthew tells us that "out of the abundance of the heart, the man speaketh."
Lord knows I'm not perfect. Lord knows I've let people down. It's just the time and time again from someone who should be the soft place to fall. I mean, I really am learning that God is the ONLY One who can meet all my needs. I get that. But it would be nice to have a little compassion and understanding here on earth as well. Call me naive, but I thought that people who loved each other were supposed to be nice to each other. Why is that so much to ask? So much of this just does not seem like rocket science to me, and yet....is honesty with love THAT difficult? Is being a man or woman of character just SO impossible today? Is doing what you say you will do a foreign concept? It's like, if you don't mean it, just shut up. Don't tell me you'll do or be or are something you won't or aren't or can't. Just don't.
Thank God I know Who holds my future. I don't know what's going to happen, but I KNOW that "He who began a good work in me WILL carry it on to completion." Don't know how, but I've learned long ago that the how is so far out of your control ya might as well stop worrying about it. If God gives you a peek, great. If not, hang on for the ride.
Thursday, August 20, 2009
Faces
Faces by Jan Markell
Faces...
haunting
hopeless
helpless
Reaching out
Yet backing away.
Faces...
wearing smiles,
but beneath lie
uncertainty
loneliness
alienation
apathy.
Faces...In a crowd;
Mistaking noise for laughter,
And elbows for hands,
And shoves for pats on the back.
Father, help us see the heart,
And meet a need,
Fill a void,
Be a friends.
Don't let us drown in complacency
indifference
selfish preoccupation,
Snug in our circle
Secure in our niche,
While those around us
Hear our words about
love
and
compassion
Bounce off empty walls,
Without any more meaning
Than the headline on a movie magazine.
Amen.
Faces...
haunting
hopeless
helpless
Reaching out
Yet backing away.
Faces...
wearing smiles,
but beneath lie
uncertainty
loneliness
alienation
apathy.
Faces...In a crowd;
Mistaking noise for laughter,
And elbows for hands,
And shoves for pats on the back.
Father, help us see the heart,
And meet a need,
Fill a void,
Be a friends.
Don't let us drown in complacency
indifference
selfish preoccupation,
Snug in our circle
Secure in our niche,
While those around us
Hear our words about
love
and
compassion
Bounce off empty walls,
Without any more meaning
Than the headline on a movie magazine.
Amen.
Truth
Okay, so to me, truth has always been one of those absolute things. Black and white. Something is either true, or not. Not that difficult, right?
So why is it that so many people are offended by truth? Even if'/when your only motive is love? I'm not talking subjective truth, like, "your dress is ugly," I'm talking objective truth like, "your dress is purple." Why should someone get all bent out of whack because the dress really is purple??
If people in this world would only wake up and smell reality.
Ug.
So why is it that so many people are offended by truth? Even if'/when your only motive is love? I'm not talking subjective truth, like, "your dress is ugly," I'm talking objective truth like, "your dress is purple." Why should someone get all bent out of whack because the dress really is purple??
If people in this world would only wake up and smell reality.
Ug.
Wednesday, August 19, 2009
Sensory Processing Disorder
Joy and Happiness....another thing to deal with! Yee-ha!
Whatever. Anywho. Jacob has Sensory Processing Disorder. I've been e-mailing the O.T. from Early On here in Allegan, and she has been very helpful. She is helpinig me on her own time, even though Jacob "aged out" of the program when he turned 3. She suggested some books to read, and I ordered them. I was like, hey, how do these people know my kid? He's exhibited some kind of quirky behavior, but now I have a name for it...some of the issues are:
*One volume level: loud (although he is a boy)
*Super busy 24/7 until he crashes for sleep
*Extremely picky eater
*Likes bumping into things on purpose
*Crosses ankles, stiffens up like a board, pushes on his tummy
*Rubs cuffs on sleeves, twirls hair (that's the latest)
*Loves to chew on inedible and inappropriate things
*Gags easily (this one is getting worse)
So he had his 3 year well child check up yesterday, and he's totally healthy...praise God! But for this SPD, which, hey, if this is all I have to deal with in his life, whoopee. Here's the thing: (Ashley, I'm Monk too!) A lot of the "therapy" for this is really physical stuff, which is very tough for me to do. We're talking every 2 hours. So we're workingon getting an O.T., and a dietician if necessary. I want to focus on the sensory part, which has everything to do with the eating part. The doctor, (and Doug) were more focused on the eating...Doug's like, "give us six months, we'll just have to be more forceful with what he eats) which is the exact thing to do if you want to make it worse. I don't want to obsess about it, but you can't ignore it either...this stuff can get worse and effect all other areas of his development, which I certainly don't want.
And of course, I feel guilty, because the reason he has this whole thing is from being in the NICU for 36 days. And he was in the NICU because he had MYantibodies from the MuSK+ MG in his system. SO yeah, Mommy guilt comes really easily on this one.
He is smart and wonderful and polite and perfect and all that good stuff. Honestly. There could be so much worse. I'm just a little overwhelmed right now, with home-schooling, trying to add in all these activities I'm supposed to do with him, plus singlehandedly get him to eat iron rich foods and potty train him. No problem. I AM superwoman after all.
Yah.
So if you could say a prayer, that would be great.
Whatever. Anywho. Jacob has Sensory Processing Disorder. I've been e-mailing the O.T. from Early On here in Allegan, and she has been very helpful. She is helpinig me on her own time, even though Jacob "aged out" of the program when he turned 3. She suggested some books to read, and I ordered them. I was like, hey, how do these people know my kid? He's exhibited some kind of quirky behavior, but now I have a name for it...some of the issues are:
*One volume level: loud (although he is a boy)
*Super busy 24/7 until he crashes for sleep
*Extremely picky eater
*Likes bumping into things on purpose
*Crosses ankles, stiffens up like a board, pushes on his tummy
*Rubs cuffs on sleeves, twirls hair (that's the latest)
*Loves to chew on inedible and inappropriate things
*Gags easily (this one is getting worse)
So he had his 3 year well child check up yesterday, and he's totally healthy...praise God! But for this SPD, which, hey, if this is all I have to deal with in his life, whoopee. Here's the thing: (Ashley, I'm Monk too!) A lot of the "therapy" for this is really physical stuff, which is very tough for me to do. We're talking every 2 hours. So we're workingon getting an O.T., and a dietician if necessary. I want to focus on the sensory part, which has everything to do with the eating part. The doctor, (and Doug) were more focused on the eating...Doug's like, "give us six months, we'll just have to be more forceful with what he eats) which is the exact thing to do if you want to make it worse. I don't want to obsess about it, but you can't ignore it either...this stuff can get worse and effect all other areas of his development, which I certainly don't want.
And of course, I feel guilty, because the reason he has this whole thing is from being in the NICU for 36 days. And he was in the NICU because he had MYantibodies from the MuSK+ MG in his system. SO yeah, Mommy guilt comes really easily on this one.
He is smart and wonderful and polite and perfect and all that good stuff. Honestly. There could be so much worse. I'm just a little overwhelmed right now, with home-schooling, trying to add in all these activities I'm supposed to do with him, plus singlehandedly get him to eat iron rich foods and potty train him. No problem. I AM superwoman after all.
Yah.
So if you could say a prayer, that would be great.
Tuesday, August 18, 2009
First Day of School
YAY! Jacob is a little sponge. He LOVES to learn new things. When he KNOWS he knows something, it's hilarious. He says the answer at the top of his lungs. We did counting to 20, recognizing numbers to 20, went through all the sounds of the alphabet. Did mazes where you have to "help" the mouse find the cheese (or the frog find the lily pad, etc.) by connecting the numbers 1-10. He had the hardest time holding the crayon and connecting the lines...he can recognize numbers easily.
Two days ago I was changing his diaper, and he just says, out of the blue, "pig. P-I-G." I was like, HUH??? He spelled "web" a week or so ago. He is just so stinkin' smart. Of course, I'm sure I'm a bit bias, because he is MY baby, but...he JUST turned three...he's known all his colors for at least a year, and he knows all the shapes...pentagon, hexagon, octagon...he's amazing. He knows his street address, and we're working on the city, state and zip, along with his phone number. I made a list of goals for the end of this school year...the biggest one is that he will be reading. He's already spelling...he just takes my breath away. Everywhere we go where he sees letters he just starts saying them. It's hilarious.
And he wanted to keep going! I was getting worn out from talking so much at once, my voice was tired, my trach was getting a little sore...but the look on his face...it's AWESOME! And I fianlly get to use my teaching degree...ONLY 16 years after I received it!
Have a blessed day everyone!
Two days ago I was changing his diaper, and he just says, out of the blue, "pig. P-I-G." I was like, HUH??? He spelled "web" a week or so ago. He is just so stinkin' smart. Of course, I'm sure I'm a bit bias, because he is MY baby, but...he JUST turned three...he's known all his colors for at least a year, and he knows all the shapes...pentagon, hexagon, octagon...he's amazing. He knows his street address, and we're working on the city, state and zip, along with his phone number. I made a list of goals for the end of this school year...the biggest one is that he will be reading. He's already spelling...he just takes my breath away. Everywhere we go where he sees letters he just starts saying them. It's hilarious.
And he wanted to keep going! I was getting worn out from talking so much at once, my voice was tired, my trach was getting a little sore...but the look on his face...it's AWESOME! And I fianlly get to use my teaching degree...ONLY 16 years after I received it!
Have a blessed day everyone!
Saturday, August 15, 2009
To Jacob on his Brithday
My Precious Big Boy Jacob,
I don’t even know where to begin. I love you so much, and am so thankful that God gave us you…precious, personable, perfect you. You are more than I ever could have hoped for in a child.
Exactly three years ago from this very moment the doctors were getting Mommy ready to have you. They opened my tummy like a present, and Daddy and I received the best gift of all….You.
Daddy and I waited for you for so many years. We didn't even think it was possible for Mommy to have you. In fact, that I DID have you was purely a miracle. It took every ounce of strength I had, every ounce of miraculous energy that God could give me, to grow you and keep you safe until you were born.
And what a moment. When I saw you for the first time, I had never known such love. I immediately had a better understanding of God’s love for His children…what a profoundly overwhelming feeling. When you had to stay in the NICU, Mommy was so sad. I cried every day when I had to leave you there, all alone. I prayed every day that God would make you strong. I covered your crib in Scripture verses. I counted the days and watched as you got stronger and stronger. Seeing you on the vent, all the tubes and wires...it was SO scary and sad. The only thing that kept me going was knowing that you WOULD get better. I called the NICU every night before we went to sleep to check on you and make sure your were still doing okay.
You were the only baby in there on a vent...which was ironic because you were so big you wouldn't even fit in the isolets. All these teeny tiny 2 pound babies were breathing on their own, and here's my big ol' 8 1/2 pound lug on a vent.
Mommy felt so guilty because it was my antibodies that were making you sick. You had transient neonatal myasthenia gravis. We knew that as soon as my antibodies were out of your system, you would be fine. But for the time being, you were weak and floppy...but you were so observant. Even when you were very first born you looked at everything. You observed everything. You loved lights, and when we put the mobile in your big boy crib in the NICU, you just came alive.
I held you every day, whether you were on the vent or not...I just had to. This tiny life, one that I had helped create, this huge shock of thick black hair, the bluest eyes I had ever seen...my gorgeous, precious, perfect child. We took you home after 36 days. It was the second happiest day of my life. Now I want to wrap you in bubble wrap and keep the whole world away so you don't get sick or hurt. But oh, what the world would miss out on!
As I watch you grow, I am so thankful every single day for you. You bring me so much joy. God blessed me with a such a smart, healthy, beautiful, funny, busy, perfect little boy. I would do anything for you. I would give my very life for you. I can't believe you are three years old. You are such a big boy. My heart is in my throat, and tears well in my eyes as I think of you. You are my priceless son, and I thank God for every minute I have you.
Love
Mommy
I don’t even know where to begin. I love you so much, and am so thankful that God gave us you…precious, personable, perfect you. You are more than I ever could have hoped for in a child.
Exactly three years ago from this very moment the doctors were getting Mommy ready to have you. They opened my tummy like a present, and Daddy and I received the best gift of all….You.
Daddy and I waited for you for so many years. We didn't even think it was possible for Mommy to have you. In fact, that I DID have you was purely a miracle. It took every ounce of strength I had, every ounce of miraculous energy that God could give me, to grow you and keep you safe until you were born.
And what a moment. When I saw you for the first time, I had never known such love. I immediately had a better understanding of God’s love for His children…what a profoundly overwhelming feeling. When you had to stay in the NICU, Mommy was so sad. I cried every day when I had to leave you there, all alone. I prayed every day that God would make you strong. I covered your crib in Scripture verses. I counted the days and watched as you got stronger and stronger. Seeing you on the vent, all the tubes and wires...it was SO scary and sad. The only thing that kept me going was knowing that you WOULD get better. I called the NICU every night before we went to sleep to check on you and make sure your were still doing okay.
You were the only baby in there on a vent...which was ironic because you were so big you wouldn't even fit in the isolets. All these teeny tiny 2 pound babies were breathing on their own, and here's my big ol' 8 1/2 pound lug on a vent.
Mommy felt so guilty because it was my antibodies that were making you sick. You had transient neonatal myasthenia gravis. We knew that as soon as my antibodies were out of your system, you would be fine. But for the time being, you were weak and floppy...but you were so observant. Even when you were very first born you looked at everything. You observed everything. You loved lights, and when we put the mobile in your big boy crib in the NICU, you just came alive.
I held you every day, whether you were on the vent or not...I just had to. This tiny life, one that I had helped create, this huge shock of thick black hair, the bluest eyes I had ever seen...my gorgeous, precious, perfect child. We took you home after 36 days. It was the second happiest day of my life. Now I want to wrap you in bubble wrap and keep the whole world away so you don't get sick or hurt. But oh, what the world would miss out on!
As I watch you grow, I am so thankful every single day for you. You bring me so much joy. God blessed me with a such a smart, healthy, beautiful, funny, busy, perfect little boy. I would do anything for you. I would give my very life for you. I can't believe you are three years old. You are such a big boy. My heart is in my throat, and tears well in my eyes as I think of you. You are my priceless son, and I thank God for every minute I have you.
Love
Mommy
Thursday, August 13, 2009
The Newest Members of our Family
Here they are!!!!
Stash and Chia. Aren't they GORGEOUS???
Jacob is already in love...me too! They are so cute and cuddly...you can just pick them up and snuggle with them! Doug built the rabbit condo...so they have indoor/outdoor accomodations, and they even have a shingled roof! Doug doesn't ever do things half way, I'll tell ya that much!
I have dial-up, so this is taking forever...not that you know that! I'm a little concerned that we're not sure if they are boys or girls...could be one of each....I suppose we'll find out sooner or later!
Wednesday, August 12, 2009
The Battle of Balance
A good friend loaned me a book to read called “Waiting For A Miracle” by Jan Markell. At first I was like, Oh, here we go, another name-it-and-claim-it I’m healed book. However, when I started to read it, I found the simple yet profound account of a woman, much like myself, struggling with chronic illness, and just trying to pass along some encouragement to others. Her honestly hits so close to home. It is as if she is in my mind…the same struggles, the same questions. But yet in her heart, and in mine, at our most basic level we just want to love the Lord and encourage others.
One of the most difficult concepts in dealing with chronic illness (and just plain old life) is balance. Especially when you never know how you’re going to feel! Do you make commitments?? Do you keep them at any cost? Do you never commit because you don’t know if you’ll be able to fulfill your obligation?
The following are excerpts from her book, a chapter titled “The Dilema of Balance.” Tears welled in my eyes and streamed down my face as I read words that have gone through my own mind a thousand times….
“Being ill is a full-time job without vacation or other fringe benefits. And it’s a balancing act of the greatest magnitude! Balancing activity and anticipation with a daily routine of needed rest and quiet is not an easy assignment….
We wonder if we should keep our dilemma private, or speak too often about it and risk the flight of loved ones. Should we ask for help and risk being a burden, or should we maintain some independence which can bring on isolation or other problems? Should we push ourselves socially in the interest of our mental health, or should we play it safe and virtually vegetate, thus allowing rest therapy a better chance of bringing recovery from our affliction?….
Letting go is one of the most difficult assignments, for it is not just the act of letting go, but embracing the mind-set of acceptance at the same time….
Living among healthy people who have no restrictions offers us overwhelming temptation to depart from a strict recovery program that includes a needed balance. Well people will want us to make commitments, which can be a double-edged sword. With commitment there is anticipation; however, there is also the dread of not being able to follow through with that commitment. Then anticipation turns to stress, stress to anxiety, and anxiety to even poorer health.
Even good stress needs balance. Good stress is an event or opportunity that involves fun, activity, and people we love. It involves fellowship, caring, sharing and love. But it also may involve too many people, too much talking, and too much activity. Then we’re back to square one.”
WOW. Everything I feel summed up in a few pages in a book. If you know someone with chronic illness, I hope you read this carefully….sometimes that person wants nothing more than to go out with you, to hang out, to go to lunch, whatever, but the cost of going is more than our bodies can pay that day. But more than anything, we don’t want to be isolated, so we push ourselves to the brink…and sometimes over it.
For our caregivers…God bless you. No really. God REALLY, REALLY bless your socks off. It is NOT easy taking care of someone who is chronically ill, because if you are the primary caregiver, you are in the balance battle as well.
Only by surrendering 100% of all we are to God can we even hope to begin to figure this out.
One of the most difficult concepts in dealing with chronic illness (and just plain old life) is balance. Especially when you never know how you’re going to feel! Do you make commitments?? Do you keep them at any cost? Do you never commit because you don’t know if you’ll be able to fulfill your obligation?
The following are excerpts from her book, a chapter titled “The Dilema of Balance.” Tears welled in my eyes and streamed down my face as I read words that have gone through my own mind a thousand times….
“Being ill is a full-time job without vacation or other fringe benefits. And it’s a balancing act of the greatest magnitude! Balancing activity and anticipation with a daily routine of needed rest and quiet is not an easy assignment….
We wonder if we should keep our dilemma private, or speak too often about it and risk the flight of loved ones. Should we ask for help and risk being a burden, or should we maintain some independence which can bring on isolation or other problems? Should we push ourselves socially in the interest of our mental health, or should we play it safe and virtually vegetate, thus allowing rest therapy a better chance of bringing recovery from our affliction?….
Letting go is one of the most difficult assignments, for it is not just the act of letting go, but embracing the mind-set of acceptance at the same time….
Living among healthy people who have no restrictions offers us overwhelming temptation to depart from a strict recovery program that includes a needed balance. Well people will want us to make commitments, which can be a double-edged sword. With commitment there is anticipation; however, there is also the dread of not being able to follow through with that commitment. Then anticipation turns to stress, stress to anxiety, and anxiety to even poorer health.
Even good stress needs balance. Good stress is an event or opportunity that involves fun, activity, and people we love. It involves fellowship, caring, sharing and love. But it also may involve too many people, too much talking, and too much activity. Then we’re back to square one.”
WOW. Everything I feel summed up in a few pages in a book. If you know someone with chronic illness, I hope you read this carefully….sometimes that person wants nothing more than to go out with you, to hang out, to go to lunch, whatever, but the cost of going is more than our bodies can pay that day. But more than anything, we don’t want to be isolated, so we push ourselves to the brink…and sometimes over it.
For our caregivers…God bless you. No really. God REALLY, REALLY bless your socks off. It is NOT easy taking care of someone who is chronically ill, because if you are the primary caregiver, you are in the balance battle as well.
Only by surrendering 100% of all we are to God can we even hope to begin to figure this out.
Monday, August 10, 2009
Doubting Thomas
Things I learned from Thomas the Train.
1. Pound cake is very, very heavy. Not even dowels and wood planks help. Adding 5 tubes of decorative frosting makes pound cake even heavier.
2. Cake from a box is NOT heavy. (Can you see where I’m going?)
3. My husband is not the most gentle of drivers. Remember the episode of the Brady Bunch when Greg and Marcia were bragging about being a better driver than the other, and they set up the egg on the pylon test in their driveway? The object was to get as close to the pylon, even touching it, without breaking the egg. Let’s just say I’m pretty sure Doug’s egg would have broken.
4. Sometimes things on that are pretty and look almost perfect on the outside are gooey and raw and not done in the middle. In other words, don’t judge a book by its cover. Or in this cake, don’t judge a cake by its frosting!
5. Sometimes really messy, crumbly, unplanned things are much better than other things you spend hours on.
6. Thomas doesn’t like being in a car for an hour on a 95 degree day. Even with air conditioning.
7. Once Thomas leaves the tracks, there’s no saving him.
8. Take pictures of anything you’re proud of before anyone else sees or touches it.
9. Always have a plan B; in this case, Mom’s homemade coconut cream pie.
10. You can think you want something really, really bad, wait a long time for it, and then when you can actually have it, it just doesn’t matter.
Yes, as you may have surmised, Thomas had an accident. We decided it would be cute to make another (regular) cake and put Thomas in the middle of it, and make train tracks on either side of him, so it looked like he was going down the rails. Doug put some dowels in the cake, and a wooden plank-platform thingy under Thomas to support him. Did I tell you pound cake is really heavy??
Well, we made it to M-222 and US 131. Turned left onto the on ramp, and over went Thomas the Train. Because the cake underneath it was so soft and fresh and lovely, it just disintegrated. There was no righting Thomas. By the time we got to my sister’s house in Coopersville, there was almost nothing left of the cake underneath Thomas…it was like it had just disintegrated.
Thomas still looked okay from one side, so we concentrated on that side. Jacob was practically foaming at the mouth. He had been staring at this cake for 3 days now, and had been so very patient. He even managed to eat about 6 almonds before demanding cake.
I cut into Thomas…thinking I was kind of glad he fell over, because if he had still been all pretty I might have had a hard time! The first piece went to my baby boy…who took one bite and promptly said, “No thank you.” Well, at least he’s polite. I tried it…it was really dry. Then, about another inch and a half in, it was nice and moist. THEN, it was like a bundt cake. Remember those? The ring cakes that usually had some kind of ooey, gooey, pudding like filling in them? Um, yah. That was the inside of Thomas. It was literally oozing out. All that work. Gone in an instant.
So, other than the ten lessons above, I learned this one too:
Next year, we’re getting cake from Costco!
1. Pound cake is very, very heavy. Not even dowels and wood planks help. Adding 5 tubes of decorative frosting makes pound cake even heavier.
2. Cake from a box is NOT heavy. (Can you see where I’m going?)
3. My husband is not the most gentle of drivers. Remember the episode of the Brady Bunch when Greg and Marcia were bragging about being a better driver than the other, and they set up the egg on the pylon test in their driveway? The object was to get as close to the pylon, even touching it, without breaking the egg. Let’s just say I’m pretty sure Doug’s egg would have broken.
4. Sometimes things on that are pretty and look almost perfect on the outside are gooey and raw and not done in the middle. In other words, don’t judge a book by its cover. Or in this cake, don’t judge a cake by its frosting!
5. Sometimes really messy, crumbly, unplanned things are much better than other things you spend hours on.
6. Thomas doesn’t like being in a car for an hour on a 95 degree day. Even with air conditioning.
7. Once Thomas leaves the tracks, there’s no saving him.
8. Take pictures of anything you’re proud of before anyone else sees or touches it.
9. Always have a plan B; in this case, Mom’s homemade coconut cream pie.
10. You can think you want something really, really bad, wait a long time for it, and then when you can actually have it, it just doesn’t matter.
Yes, as you may have surmised, Thomas had an accident. We decided it would be cute to make another (regular) cake and put Thomas in the middle of it, and make train tracks on either side of him, so it looked like he was going down the rails. Doug put some dowels in the cake, and a wooden plank-platform thingy under Thomas to support him. Did I tell you pound cake is really heavy??
Well, we made it to M-222 and US 131. Turned left onto the on ramp, and over went Thomas the Train. Because the cake underneath it was so soft and fresh and lovely, it just disintegrated. There was no righting Thomas. By the time we got to my sister’s house in Coopersville, there was almost nothing left of the cake underneath Thomas…it was like it had just disintegrated.
Thomas still looked okay from one side, so we concentrated on that side. Jacob was practically foaming at the mouth. He had been staring at this cake for 3 days now, and had been so very patient. He even managed to eat about 6 almonds before demanding cake.
I cut into Thomas…thinking I was kind of glad he fell over, because if he had still been all pretty I might have had a hard time! The first piece went to my baby boy…who took one bite and promptly said, “No thank you.” Well, at least he’s polite. I tried it…it was really dry. Then, about another inch and a half in, it was nice and moist. THEN, it was like a bundt cake. Remember those? The ring cakes that usually had some kind of ooey, gooey, pudding like filling in them? Um, yah. That was the inside of Thomas. It was literally oozing out. All that work. Gone in an instant.
So, other than the ten lessons above, I learned this one too:
Next year, we’re getting cake from Costco!
Saturday, August 8, 2009
Jacob's Birthday Cake
Some of you may have seen this on facebook, but I am just so proud. Last year I made an elephant cake with a tin I had purchased...it was a NIGHTMARE. It looked like Jacob did it, not an adult. It was horrifying....So when I purchased teh 3-D trains pans, I thought, "Have you gone utterly mad, woman??" I didn't answer, so I think that means no...not sure.
Anywho...I was going to get the regular, flat train pan, but I though, no way, how cool would a 3-D one be?? So I get the pans, read the instructions first (SO glad I did)...it said to use pound cake batter. Pound cake? I didn't have pound cake....but for my little birthday boy, Betty Crocker here found a poundcake recipe, and had to make a double batch. EIGHT eggs. Good thing we have chickens!!!
So...I load the batter into a greased AND floured pan (I haven't done that since the invention of PAM, by the way), and put the top pan on and into the oven he goes. Tick tock tick tock. After I took it out and checked it, I saw that it ACTUALLY worked! It looked like a train. By the time I had made the batter, baked it and let it completely cool, we were already talking 6 hours.
Then I decide I want to ice it using little stars in all the colors of Thomas the train...Jacob's addiction of choice right now. Well, that didn't last long with my hands the way they are, so the starts kinda started running together...and then, OR COURSE...we ran out of black. So Doug had to run to the store in the 3rd hour of my decorating marathon and get one more tube of black.
Today we decided we needed a base to go under it, so while Jacob is napping I made a regular 9x13 cake, which we will flip upside down on a cookie sheet, frost and paint railroad tracks on, before loading a doweled Thomas onto it. Doug is going to put dowels or something in the cake so it stands up. It's very heavy.
So here's the Thomas part...it only took 5 hours of actual MAKING it and 4 to cool in between. The things we do for our children. But the look on his face was SO worth it.
Here's another one if I can get it to upload without taking another 20 minutes!!! Oh, how I LOVE dial-up! 
Friday, August 7, 2009
Haven't We Been By Here Before??
Yup. You guessed it. Hip pain. Nice.
Called the neuro...he was gone for the day. I've been on 25 mg of Prednisone instead of 30mg for 4 days, and the pain started last night. Worse today. I have to go on alternating 30/25 every other day, and if it gets better we know it's the prednisone. If it keeps getting worse, I don't know what happens. Trying very hard to keep my attitude out of the toilet. It seems like I'm "allocated" a certain number of good days before something gets ripped away. I asked Dr. Teener when I saw him last Friday if I can expect this for the rest of my life, that at any time I could just take a nose dive. He said, "Unfortunately, yes."
I ran across this as I was cleaning out some files....I love it, and certainly need to be reminded of it right now!!!
Called the neuro...he was gone for the day. I've been on 25 mg of Prednisone instead of 30mg for 4 days, and the pain started last night. Worse today. I have to go on alternating 30/25 every other day, and if it gets better we know it's the prednisone. If it keeps getting worse, I don't know what happens. Trying very hard to keep my attitude out of the toilet. It seems like I'm "allocated" a certain number of good days before something gets ripped away. I asked Dr. Teener when I saw him last Friday if I can expect this for the rest of my life, that at any time I could just take a nose dive. He said, "Unfortunately, yes."
I ran across this as I was cleaning out some files....I love it, and certainly need to be reminded of it right now!!!
He sat by a fire of sevenfold heat
As he watched by the precious ore
And closer he bent with a turning gaze
As he heated more and more.
He knew he had ore that could stand the test
And he wanted the finest gold
To mold as a crown for the king to wear
Set with gems with price untold.
So, he laid our gold in the burning fire
Though we fey (faint) would have said, "Nay,"
And he watched as the dross that we said
We had not seen was melted and passed it away.
And the gold grew brighter and yet more bright
But our eyes were filled with tears.
We saw but the fire, not the master's hand
And questioned with anxious fears.
Yet our gold shown out with a richer glow
As it mirrored a form above
That bent o'er the fire, though unseen by us
With a look of ineffable love.
Can we think that it pleases his loving heart
To cause us moments of pain?
No. But he saw through the present cross
The bliss of eternal gain.
So he waited there with a watchful eye
With a love that is strong and sure
And his goal did not suffer a bit more heat
Than was needed to make it pure.
-Unknown
Thursday, August 6, 2009
Office Supply Junkie and Dentists
Ya, I know. What can they possibly have in common...nothing really, I just have two things to talk about and I didn't want to do two separate posts! It's all about efficiency people!
So first of all, I have already admitted on facebook that I have some kind of bizarre office supply addiction. A few years ago, friends got me a gift certificate to Office Max. I was the happiest girl on the planet. It's just not normal. I am a teacher by nature, by degree, by expired license, so maybe that plays a part in it...but yikes. Who has an entire FILING CABINET DRAWER full of writing utensils separated and labeled? Stick pens and refills in one pencil case, colored gel pens and colored in pens in another, high-liters, dry erase markers, permanent markers in another, and TWO with click and twist pens. One of them also has colored pencils and regular pencils, but I can't remember right now...it's all labeled, so don't worry. Oh, and I found NINE boxes of 24 count crayons. Who needs NINE??? I also have at least 1/2 a drawer full of packages of loose leaf notebook paper. I have folders and spiral notebooks....Jacob will not need school supplies until college. My sister actually suggested I donate some stuff to local schools...I almost fainted. Would she donate a child?? Do people not understand addiction?!?!?! I did find though, that I am not the only one...maybe we need OSJA? Office Supply Junkie's Anonymous?
Anywho....so yesterday morning I had to go to the dentist. Two crowns. TWO. Ouch. Two hour appointment. I got the temporary crowns right now, and will get one permanent crown now, and the other one after the calendar year begins again so I have insurance again. This drained what was left of our dental insurance, plus we had to pay over $500. To suffer. There is something SO not right about that.
I have TMJ, so keeping my mouth open that long is horrifying (hush you, peanut gallery). Today, my face feels like it's been punched. My jaws are killing me...my gums are all swollen....Three shots of novacaine...and not NEARLY enough nitrous. I kept telling them to turn it up...otherwise I white knuckle it the whole time and end up feeling like I've been in a car wreck. I had head phones on...crankin' up the Third Day...eyes shut...it still doesn't matter. Not enough nitrous and I'm still there being tortured. I think I'd rather be waterboarded.
It's amazing how you adapt to things though....like how do you give nitrous with a trach? You can't put it over my nose, because I can't breathe through my nose....same goes for my mouth. So, you have to put it over my trach...but how do you seal it so the dentist isn't the one getting happy?? We first tried a pediatric nose cone, but I knew as soon as it was on it wasn't sealing... I was like, hey, turn it upside down. I could just feel the way it had to be...and sure enough... worked like a charm. And they said it couldn't be done...where there is a will...there IS a way!
SO...in the horribly likely event (yah) that you have a trach and still need nitrous, ask for an upside-down pediatric nose cone! The things you can learn on the internet, I swear.
Have a good day interpeeps!
So first of all, I have already admitted on facebook that I have some kind of bizarre office supply addiction. A few years ago, friends got me a gift certificate to Office Max. I was the happiest girl on the planet. It's just not normal. I am a teacher by nature, by degree, by expired license, so maybe that plays a part in it...but yikes. Who has an entire FILING CABINET DRAWER full of writing utensils separated and labeled? Stick pens and refills in one pencil case, colored gel pens and colored in pens in another, high-liters, dry erase markers, permanent markers in another, and TWO with click and twist pens. One of them also has colored pencils and regular pencils, but I can't remember right now...it's all labeled, so don't worry. Oh, and I found NINE boxes of 24 count crayons. Who needs NINE??? I also have at least 1/2 a drawer full of packages of loose leaf notebook paper. I have folders and spiral notebooks....Jacob will not need school supplies until college. My sister actually suggested I donate some stuff to local schools...I almost fainted. Would she donate a child?? Do people not understand addiction?!?!?! I did find though, that I am not the only one...maybe we need OSJA? Office Supply Junkie's Anonymous?
Anywho....so yesterday morning I had to go to the dentist. Two crowns. TWO. Ouch. Two hour appointment. I got the temporary crowns right now, and will get one permanent crown now, and the other one after the calendar year begins again so I have insurance again. This drained what was left of our dental insurance, plus we had to pay over $500. To suffer. There is something SO not right about that.
I have TMJ, so keeping my mouth open that long is horrifying (hush you, peanut gallery). Today, my face feels like it's been punched. My jaws are killing me...my gums are all swollen....Three shots of novacaine...and not NEARLY enough nitrous. I kept telling them to turn it up...otherwise I white knuckle it the whole time and end up feeling like I've been in a car wreck. I had head phones on...crankin' up the Third Day...eyes shut...it still doesn't matter. Not enough nitrous and I'm still there being tortured. I think I'd rather be waterboarded.
It's amazing how you adapt to things though....like how do you give nitrous with a trach? You can't put it over my nose, because I can't breathe through my nose....same goes for my mouth. So, you have to put it over my trach...but how do you seal it so the dentist isn't the one getting happy?? We first tried a pediatric nose cone, but I knew as soon as it was on it wasn't sealing... I was like, hey, turn it upside down. I could just feel the way it had to be...and sure enough... worked like a charm. And they said it couldn't be done...where there is a will...there IS a way!
SO...in the horribly likely event (yah) that you have a trach and still need nitrous, ask for an upside-down pediatric nose cone! The things you can learn on the internet, I swear.
Have a good day interpeeps!
Tuesday, August 4, 2009
Miracle Upon Miracle
I have FINALLY been able to attack my office, and I cannot TELL you how happy that makes me! It is HARD work going through filing cabinets, moving files, shredding, rearranging, we're talking files, reams of paper, books...But I'm doing it....ON MY OWN!!! You name it, I've got it in my office. Several know of my office supply addiction...well, I am BARELY seeing the scope of it going through all my stuff. Let's just say Jacob will probably not have to buy a pen or loose leaf paper until 2026. If we're still on this fetid planet. I mean, how many stick pens can one person use in a lifetime???
Anywho. That's one miracle. That I have been able to finally get to this room! While going through the files, I came across the first sleep study I ever had, in September of 2000, while trying to get diagnosed. To say it was a jaw-dropper is the understatement of the century. I was looking at the report, and I stopped breathing 32 times in 6 hours. That's almost evey 10 minutes. I had 178 episodes of shallow, or insufficient breathing, called hypopneas. That's almost every 2 minutes. The longest amount of time I went without breathing was 29 seconds. I can't even hold my breath for 29 seconds right now! My oxygen saturation went down to TWENTY SEVEN. Yes, that's 27. "Normal" is 98-100. When you're under anesthesia and your oxygen gets into the upper 80's the docs start freaking out. Mine was 27. They checked my ABG (arterial blood gas, which hurts like a bugger; they have to draw blood from an artery, not a vein) and the carbon dioxide in my blood was 68.7. The reference range is 35-45. My oxygen was 54.7; the reference range is 75-100. When Jacob was in the NICU, he was on the vent when his CO2 was 59. Because there was so little oxygen in my blood, my heart had to pump harder and faster to try to keep my brain alive...so my average, resting heartrate was around 130. "Normal" is 60-80. When your heart beats that fast it's called tachycardia, and it can kill you.
I give you all these numbers so you fully understand the dire situation I was in! I shouldn't have been functioning (which I wasn't doing very well at this point) let alone not have brain damage, or even be alive! I had been making these horrible noises in my sleep for almost 3 years, so you KNOW that this didn't happen overnight. I can trace my first MG symptom back to July of 1995. Fourteen years ago. Yet I went undiagnosed and untreated for over 5 years....
You know the rest of the story with the MRI under sedation, the emergency intubation, the staph pneumonia....I'm telling you, friends, that what satan meant for harm God turned into good! He IS the God who parted the Red Sea! He IS the God that stopped the waters of the Jordan river so the Israelites could cross over. He IS the God who raised His one and only Son from the dead....and He IS the God that saved my life. The enemy tried hard to wipe me out, but God would not allow it.
We all have purpose. We are all here for a reason. There are no mistakes. I am so thankful that I am here, typing, reading, that I can see and hear...that I don't have permanent braind damage, not to mention the fact I can walk on my own, drive, speak (even though I have a trach), and have an amazing husband and absolute miracle child. It's just overwhelming.
If God has done something recently in your life, PLEASE share...If it's been a while, PLEASE reflect...everyone has Red Sea moments...you just have to recognize them for what they are.
Anywho. That's one miracle. That I have been able to finally get to this room! While going through the files, I came across the first sleep study I ever had, in September of 2000, while trying to get diagnosed. To say it was a jaw-dropper is the understatement of the century. I was looking at the report, and I stopped breathing 32 times in 6 hours. That's almost evey 10 minutes. I had 178 episodes of shallow, or insufficient breathing, called hypopneas. That's almost every 2 minutes. The longest amount of time I went without breathing was 29 seconds. I can't even hold my breath for 29 seconds right now! My oxygen saturation went down to TWENTY SEVEN. Yes, that's 27. "Normal" is 98-100. When you're under anesthesia and your oxygen gets into the upper 80's the docs start freaking out. Mine was 27. They checked my ABG (arterial blood gas, which hurts like a bugger; they have to draw blood from an artery, not a vein) and the carbon dioxide in my blood was 68.7. The reference range is 35-45. My oxygen was 54.7; the reference range is 75-100. When Jacob was in the NICU, he was on the vent when his CO2 was 59. Because there was so little oxygen in my blood, my heart had to pump harder and faster to try to keep my brain alive...so my average, resting heartrate was around 130. "Normal" is 60-80. When your heart beats that fast it's called tachycardia, and it can kill you.
I give you all these numbers so you fully understand the dire situation I was in! I shouldn't have been functioning (which I wasn't doing very well at this point) let alone not have brain damage, or even be alive! I had been making these horrible noises in my sleep for almost 3 years, so you KNOW that this didn't happen overnight. I can trace my first MG symptom back to July of 1995. Fourteen years ago. Yet I went undiagnosed and untreated for over 5 years....
You know the rest of the story with the MRI under sedation, the emergency intubation, the staph pneumonia....I'm telling you, friends, that what satan meant for harm God turned into good! He IS the God who parted the Red Sea! He IS the God that stopped the waters of the Jordan river so the Israelites could cross over. He IS the God who raised His one and only Son from the dead....and He IS the God that saved my life. The enemy tried hard to wipe me out, but God would not allow it.
We all have purpose. We are all here for a reason. There are no mistakes. I am so thankful that I am here, typing, reading, that I can see and hear...that I don't have permanent braind damage, not to mention the fact I can walk on my own, drive, speak (even though I have a trach), and have an amazing husband and absolute miracle child. It's just overwhelming.
If God has done something recently in your life, PLEASE share...If it's been a while, PLEASE reflect...everyone has Red Sea moments...you just have to recognize them for what they are.
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