Not a whole lot new to report hear on my end. I'm still waiting to get the green light from insurance to have my blood drawn for the mitochondrial labs. I have other labs that need to be done as well that I have been putting off in hopes that I could do them all at once, but I may go ahead and get them done this next week: my hair has been falling out since the beginning of June so that's what those labs are for. Lucky for me, I had a lot to start with, so no one has noticed yet except for me, but we are talking major hair loss at this point...I think I could knit a scarf or child-sized sweater from all the hair I've lost! The upside is, I can straighten my hair in just two layers instead of three; the downside is, there doesn't seem to be an end to this and I can't say I'm a fan. It could just be stress; however, my stress level didn't really go up at all (well, until about a week ago when I found about about the mito. thing!). Anyway, the summer is marching on here at our house and I can't believe that school starts up again in just a few weeks! I hope you are enjoying your summer and staying cool! Karin
PS For those of you who are tracking the Floor family, his surgery went well and he is recovering nicely. Praise God! His sense of humor is fully intact and they are updating their blog frequently: thefloorfour.blogspot.com
Sunday, July 25, 2010
Wednesday, July 14, 2010
Coincidence? I think not.
I don't believe it coincidences, and this week just affirms that. So much has happened in the last three days, I will try to summarize as best as I can without being long-winded.
On Sunday, some of the elders at our church, family, and friends gathered to pray over me. It's something I've been thinking about for some time now, but wasn't really sure if I was "sick enough." Since we are at 17 months now, I figured it's time and contacted the church last week. It was an amazing time of prayer and I felt God's presence and so much peace! I know some of you couldn't make it but were praying from afar, and I so appreciate and cherish those prayers.
On Monday, I went back to Dr. Gladd to get my adrenal gland results. We've been praying that they would show something, anything, so that we know what we are dealing with and could start moving forward. God answered those prayers! My adrenal glands are barely functioning, which is causing my extreme fatigue and very low metabolism (for you medical people out there, 24 hour cortisol level = 10, should be between 23-42). I also have three parasites in my digestive system, which may be part of the problem. We are going after these problems with gusto, and I am also back on a gluten-free diet for 3-6 months just to try and help calm my immune system down (I showed a small gluten-sensitivity, not high enough to need to avoid gluten long-term, YES!).
On Tuesday, I went to see Dr. Bader, the geneticist. If you recall, I was sent to see her because another doctor thought I might have Elhers-Danlos Syndrome. Well, I do have type III EDS and she also thinks I have another genetic disorder, Mitochondrial Disease. In the onslaught of information and questions I totally forgot to ask what to do about the EDS, so we will have to get to that another day. In the meantime, I will soon be going to have a ton of labs drawn which will be sent all over the country. Results will come back in about 6-8 weeks. I've not had a lot of time to research Mitochondrial Disease, but I'm not loving what I've read so far. However, if there is one thing I've learned in the last year and a half, it is not to get ahead of myself. As I've told Katie many times, "Worrying does not help the situation and is, in fact, sinful. God does not want you to worry, because He tells us in the Bible that He will take care of us."
Do I think it is a coincidence that I was sent to a geneticist for one thing, only to have them "suddenly discover" something else? Um, nope. I also do not think it is a coincidence that we are finally starting to get answers the very day after the elders prayed for me. You see, my God is a God who carefully orchestrates everything, including all of the events in my life. I trust Him, and I am resting in His loving arms, and it feels so much better than worrying (trust me, I've tried both!!). For those prayer warriors out there please pray for:
1) tolerance of the parasite med. for the next 10 days, the first dose did not go well (nauseous)
2) patience-the kids are starting to wonder why God isn't answering their prayers for mommy to get better, so pray for their patience, as well as our patience while we wait for answers
3) increased energy and stamina - it seems to be decreasing for some reason
4) The Floors- Troy's surgery is next Tuesday at 12:30; hopefully the FINAL leg of their cancer journey!
Thank you so much, Karin
On Sunday, some of the elders at our church, family, and friends gathered to pray over me. It's something I've been thinking about for some time now, but wasn't really sure if I was "sick enough." Since we are at 17 months now, I figured it's time and contacted the church last week. It was an amazing time of prayer and I felt God's presence and so much peace! I know some of you couldn't make it but were praying from afar, and I so appreciate and cherish those prayers.
On Monday, I went back to Dr. Gladd to get my adrenal gland results. We've been praying that they would show something, anything, so that we know what we are dealing with and could start moving forward. God answered those prayers! My adrenal glands are barely functioning, which is causing my extreme fatigue and very low metabolism (for you medical people out there, 24 hour cortisol level = 10, should be between 23-42). I also have three parasites in my digestive system, which may be part of the problem. We are going after these problems with gusto, and I am also back on a gluten-free diet for 3-6 months just to try and help calm my immune system down (I showed a small gluten-sensitivity, not high enough to need to avoid gluten long-term, YES!).
On Tuesday, I went to see Dr. Bader, the geneticist. If you recall, I was sent to see her because another doctor thought I might have Elhers-Danlos Syndrome. Well, I do have type III EDS and she also thinks I have another genetic disorder, Mitochondrial Disease. In the onslaught of information and questions I totally forgot to ask what to do about the EDS, so we will have to get to that another day. In the meantime, I will soon be going to have a ton of labs drawn which will be sent all over the country. Results will come back in about 6-8 weeks. I've not had a lot of time to research Mitochondrial Disease, but I'm not loving what I've read so far. However, if there is one thing I've learned in the last year and a half, it is not to get ahead of myself. As I've told Katie many times, "Worrying does not help the situation and is, in fact, sinful. God does not want you to worry, because He tells us in the Bible that He will take care of us."
Do I think it is a coincidence that I was sent to a geneticist for one thing, only to have them "suddenly discover" something else? Um, nope. I also do not think it is a coincidence that we are finally starting to get answers the very day after the elders prayed for me. You see, my God is a God who carefully orchestrates everything, including all of the events in my life. I trust Him, and I am resting in His loving arms, and it feels so much better than worrying (trust me, I've tried both!!). For those prayer warriors out there please pray for:
1) tolerance of the parasite med. for the next 10 days, the first dose did not go well (nauseous)
2) patience-the kids are starting to wonder why God isn't answering their prayers for mommy to get better, so pray for their patience, as well as our patience while we wait for answers
3) increased energy and stamina - it seems to be decreasing for some reason
4) The Floors- Troy's surgery is next Tuesday at 12:30; hopefully the FINAL leg of their cancer journey!
Thank you so much, Karin
Thursday, July 8, 2010
Genetics Appointment
My appointment with Dr. Bader is SET! I've gotten a little impatient with waiting for the referral from Dr. Fortin's office (no surprise there) so I went ahead and called myself today. They let me make the appointment myself and it is NEXT Tuesday at 10:00!! Hooray! I am so thankful I can get in that early! I have no idea what to expect or if they will do testing then or at a future appointment, but I am thrilled to get the ball rolling. My dad started doing his own research Tuesday night and found some information on the John Ritter Foundation website (as you may recall, John Ritter died suddenly of an aortic aneurysm a few years back, the exact same kind my dad has). Long story short, he has been talking with a genetic counselor he found through the Foundation and she wants to include him in the research study she is doing at the University of Texas and will be testing his DNA for FREE! How cool is that?? She is interested in what becomes of my testing as well and I will be contacting her soon. Good news all the way around today!
Tuesday, July 6, 2010
Psalm 77
This Psalm so accurately reflects my own emotional roller coaster today. Its conclusion is the same as mine, and I will remember the miracles of long ago and He who led His people like a flock. I will trust in the Lord my God, for He has a plan for my life. He formed me in my mother's womb and does not make mistakes. What may be news to me today is not news to him and I will hold tightly to the promise that He has a plan.
Psalm 77
For the director of music. For Jeduthun. Of Asaph. A psalm.
1 I cried out to God for help;
I cried out to God to hear me.
2 When I was in distress, I sought the Lord;
at night I stretched out untiring hands
and my soul refused to be comforted.
3 I remembered you, O God, and I groaned;
I mused, and my spirit grew faint. Selah
4 You kept my eyes from closing;
I was too troubled to speak.
5 I thought about the former days,
the years of long ago;
6 I remembered my songs in the night.
My heart mused and my spirit inquired:
7 "Will the Lord reject forever?
Will he never show his favor again?
8 Has his unfailing love vanished forever?
Has his promise failed for all time?
9 Has God forgotten to be merciful?
Has he in anger withheld his compassion?" Selah
10 Then I thought, "To this I will appeal:
the years of the right hand of the Most High."
11 I will remember the deeds of the LORD;
yes, I will remember your miracles of long ago.
12 I will meditate on all your works
and consider all your mighty deeds.
13 Your ways, O God, are holy.
What god is so great as our God?
14 You are the God who performs miracles;
you display your power among the peoples.
15 With your mighty arm you redeemed your people,
the descendants of Jacob and Joseph. Selah
16 The waters saw you, O God,
the waters saw you and writhed;
the very depths were convulsed.
17 The clouds poured down water,
the skies resounded with thunder;
your arrows flashed back and forth.
18 Your thunder was heard in the whirlwind,
your lightning lit up the world;
the earth trembled and quaked.
19 Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.
20 You led your people like a flock
by the hand of Moses and Aaron.
Psalm 77
For the director of music. For Jeduthun. Of Asaph. A psalm.
1 I cried out to God for help;
I cried out to God to hear me.
2 When I was in distress, I sought the Lord;
at night I stretched out untiring hands
and my soul refused to be comforted.
3 I remembered you, O God, and I groaned;
I mused, and my spirit grew faint. Selah
4 You kept my eyes from closing;
I was too troubled to speak.
5 I thought about the former days,
the years of long ago;
6 I remembered my songs in the night.
My heart mused and my spirit inquired:
7 "Will the Lord reject forever?
Will he never show his favor again?
8 Has his unfailing love vanished forever?
Has his promise failed for all time?
9 Has God forgotten to be merciful?
Has he in anger withheld his compassion?" Selah
10 Then I thought, "To this I will appeal:
the years of the right hand of the Most High."
11 I will remember the deeds of the LORD;
yes, I will remember your miracles of long ago.
12 I will meditate on all your works
and consider all your mighty deeds.
13 Your ways, O God, are holy.
What god is so great as our God?
14 You are the God who performs miracles;
you display your power among the peoples.
15 With your mighty arm you redeemed your people,
the descendants of Jacob and Joseph. Selah
16 The waters saw you, O God,
the waters saw you and writhed;
the very depths were convulsed.
17 The clouds poured down water,
the skies resounded with thunder;
your arrows flashed back and forth.
18 Your thunder was heard in the whirlwind,
your lightning lit up the world;
the earth trembled and quaked.
19 Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.
20 You led your people like a flock
by the hand of Moses and Aaron.
Ehlers-Danlos Syndrome
July is full of doctor's appointments, and today was the first one. It was supposed to be a follow-up appointment for my third block (which went very well after the second day, by the way). Instead, the physician's assistant may have made a diagnosis. She is "95% sure" I have Ehlers-Danlos Syndrome, a genetic disorder. I once told my family doctor, "I feel like my entire body is falling apart," and that's sort of what is happening. EDS is a genetic disorder where the collagen was not properly formed when I was born. Collagen makes up your ligaments, skin, organs, etc. so all of the joint problems, bruising, etc that I've had since I was a child could be included in this. I really can't explain it well, so I am going to include a link that will. There are 7 different types of EDS. The big concern is the vascular type, as it includes aneurysms and is fatal. Since my father has an aortic aneurysm, that is a possibility for me as well. I will need to see a geneticist to find out if I do, in fact, have EDS. Please pray for answers, I'm not known for loving to live in the unknown. For more info on EDS: http://http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706
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