We are loving the "Texas Cold Front" of highs of 83- weeee doggies!
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Tuesday, September 28, 2010
My Garden Fairy
I've always said Leelah is a "muddy princess" a little bit girly and a little bit tomboy! Here's the proof:
We are loving the "Texas Cold Front" of highs of 83- weeee doggies!
We are loving the "Texas Cold Front" of highs of 83- weeee doggies!
Monday, September 20, 2010
More Clues
Today I saw Dr. Schmidt. I won't tell you why. Let's just say it happens once a year. And like I joked with her, "Shouldn't I be seeing a spelunker?" Anyhoo.
She gave me further validation that a diagnosis from Mayo is crucial and attainable. It made me feel so much better to have yet another doc on board with this plan which is daily falling into place in what can only be seen as God doing His thing. Every day I hear stories from the most random sources about Mayo Clinic success stories. Today Dr. S told me about how much I remind her of another patient of hers who suffers from many of the same symptoms: hyperflexibility, joint/loose tissues, eye problems from loose tissues, etc. This person has "Ehlers-Danlos Syndrome" which is a connective tissue disorder. There are several types of this. Ehlers-Danlos Syndrome
So we are going to cut Wikipedia some slack here. I could have chosen a different site to cite from, but I felt this was the most presentable.
I am not self-diagnosing here, but I do think we are on to something.
Since the injection, I've noticed about a 2% improvement in pain levels decreasing. Not much. I'm still unable to put weight on my leg. Oh and that steroid injection was kind of the pits. I mean, I was thankful to be able to have it done. But I felt gnarly afterwards. It actually intensified the pain for a day.
I go to Baylor Eye Clinic tomorrow for another look at the right eye which has been giving me a little trouble lately. Whatevs. Just another Tuesday.
OH and something I found to be very interesting. I have a theory. I had a very bad case of endometriosis and have to have a full hysterectomy at 26. Thankfully, we had Leelah prior- praise the Lord! Endo is basically tissue that is running rampant in the body. So I think this is connected. I asked Dr. Schmidt who performed my hyst if she thinks this is connected too. She thought it was very funny that I should ask since the girl that she was comparing me to that has EDS had the EXACT same surgeries and type of endo that I had at about the same age. VERY interesting.
For those of you out there living in chronic pain and being undiagnosed, please know something. I had a close friend tell me this encouraging word the other day, "You are not crazy, you are undiagnosed." It just made me feel so much better. So I thought I would pass it on to you. May the Lord bless you with peace that transcends all understanding.
She gave me further validation that a diagnosis from Mayo is crucial and attainable. It made me feel so much better to have yet another doc on board with this plan which is daily falling into place in what can only be seen as God doing His thing. Every day I hear stories from the most random sources about Mayo Clinic success stories. Today Dr. S told me about how much I remind her of another patient of hers who suffers from many of the same symptoms: hyperflexibility, joint/loose tissues, eye problems from loose tissues, etc. This person has "Ehlers-Danlos Syndrome" which is a connective tissue disorder. There are several types of this. Ehlers-Danlos Syndrome
So we are going to cut Wikipedia some slack here. I could have chosen a different site to cite from, but I felt this was the most presentable.
I am not self-diagnosing here, but I do think we are on to something.
Since the injection, I've noticed about a 2% improvement in pain levels decreasing. Not much. I'm still unable to put weight on my leg. Oh and that steroid injection was kind of the pits. I mean, I was thankful to be able to have it done. But I felt gnarly afterwards. It actually intensified the pain for a day.
I go to Baylor Eye Clinic tomorrow for another look at the right eye which has been giving me a little trouble lately. Whatevs. Just another Tuesday.
OH and something I found to be very interesting. I have a theory. I had a very bad case of endometriosis and have to have a full hysterectomy at 26. Thankfully, we had Leelah prior- praise the Lord! Endo is basically tissue that is running rampant in the body. So I think this is connected. I asked Dr. Schmidt who performed my hyst if she thinks this is connected too. She thought it was very funny that I should ask since the girl that she was comparing me to that has EDS had the EXACT same surgeries and type of endo that I had at about the same age. VERY interesting.
For those of you out there living in chronic pain and being undiagnosed, please know something. I had a close friend tell me this encouraging word the other day, "You are not crazy, you are undiagnosed." It just made me feel so much better. So I thought I would pass it on to you. May the Lord bless you with peace that transcends all understanding.
Friday, September 10, 2010
Mentors and Mayo
What's up cookiepants? I had a spanish teacher that called everyone 'cookiepants'. Love it.
Yesterday was a big day. It was the end of major planning for the beginning of the new mentor program, The Titus Project, for the ladies of our church. It was a fun and fierce night. And the best part was how well the Lord orchestrated everything. The night was a big Reality TV show theme. The mentees played games like American Idol and Project Runway- the duct tape/trash bag version! At the end of the night, they had their mentor and group members revealed to them. Never again can I complain I don't have a mentor! And what a blessing my sweet mentor, Candy, is. Cute and precious do not describe her well enough!! And as for the ladies in the group with me, well I cannot wait to get to know them better in this way. They are dolls. It's an exciting time. I'm very thankful to all the women that have been so involved in seeing God's plan come to fruition.
It's been a week so that means there's a new diagnosis/update for me! The emg results came back and I have nerve damage in both legs. I am still unable to put weight on my right leg and I am in major pain that has not been relieved with medicine. I have a new ortho - I had to have a 3rd opinion after I was practically tortured in an exam by the spine guy the 2nd hip doc sent me to. So we went from Katy to the med center and I am now under the care of Dr. Kaldis, who performed my dad's hip replacement surgery. Dr. K and his radiologist do not concur with the original ortho. They think that I do not have a stress fracture. That the hip MRI was showing fluid from the artherogram. Yes I am confused too.
So I was all upset from this.
And then Pop and I went to Dr. K for the results from the MRI of my lumbar spine this past Wednesday. It showed that in my L5 or lumbar spine area one of my discs is out of place and compressed and is pressing on my sciatic nerve. OUCH. He pushed on my back and I IMMEDIATELY SPAT OUT SPIT EVERYWHERE AND WAILED TEARS AND SCREAMED AND ALMOST THREW UP. I know this sounds dramatic. IT WAS!!! The pain was so awful, I couldn't remember how to walk or think for a brief minute after. They told me to sit back in the wheelchair and I couldn't even think how to sit!?!!?!!! It hurt SO bad. It was a 10. For sure.
SO Dr.K set me up for having an injection-epidural steroid- in the area that is having the pain. I go to get this on Tuesday. From -are you ready- Dr. Doctor. I JUST SAID, DR. DOCTOR!!!!!
Let the funny sink in people.
Dr.
Doctor.
Hilarious. I know that's his name, but it has just given me so much joy. I am thinking this injection will either A) not work. or B) work for a limited time only. We will see.
We booked the flight for the Mayo Clinic trip today. Oh yeah, John and I are going there so I can get an accurate diagnosis. Did I mention that the eyes and the spine and the everything are all possibly explained by a connective tissue disorder? I've been in talks with the Mayo Clinic in Rochester, MN and they are confident that the Marfan clinic they have could provide a diagnosis for me and then I could take that info and give the Houston docs something to work with. It's important and a blessing. But I will not get my hopes in it. My hopes are in the Lord. I am thankful for His provision of a place I can go to for possible answers.
Phew. This was a really long post. I've had a lot going on. As Brad said on Rachel Zoe this past week, "I'm Oscar exhausted."
Yesterday was a big day. It was the end of major planning for the beginning of the new mentor program, The Titus Project, for the ladies of our church. It was a fun and fierce night. And the best part was how well the Lord orchestrated everything. The night was a big Reality TV show theme. The mentees played games like American Idol and Project Runway- the duct tape/trash bag version! At the end of the night, they had their mentor and group members revealed to them. Never again can I complain I don't have a mentor! And what a blessing my sweet mentor, Candy, is. Cute and precious do not describe her well enough!! And as for the ladies in the group with me, well I cannot wait to get to know them better in this way. They are dolls. It's an exciting time. I'm very thankful to all the women that have been so involved in seeing God's plan come to fruition.
It's been a week so that means there's a new diagnosis/update for me! The emg results came back and I have nerve damage in both legs. I am still unable to put weight on my right leg and I am in major pain that has not been relieved with medicine. I have a new ortho - I had to have a 3rd opinion after I was practically tortured in an exam by the spine guy the 2nd hip doc sent me to. So we went from Katy to the med center and I am now under the care of Dr. Kaldis, who performed my dad's hip replacement surgery. Dr. K and his radiologist do not concur with the original ortho. They think that I do not have a stress fracture. That the hip MRI was showing fluid from the artherogram. Yes I am confused too.
So I was all upset from this.
And then Pop and I went to Dr. K for the results from the MRI of my lumbar spine this past Wednesday. It showed that in my L5 or lumbar spine area one of my discs is out of place and compressed and is pressing on my sciatic nerve. OUCH. He pushed on my back and I IMMEDIATELY SPAT OUT SPIT EVERYWHERE AND WAILED TEARS AND SCREAMED AND ALMOST THREW UP. I know this sounds dramatic. IT WAS!!! The pain was so awful, I couldn't remember how to walk or think for a brief minute after. They told me to sit back in the wheelchair and I couldn't even think how to sit!?!!?!!! It hurt SO bad. It was a 10. For sure.
SO Dr.K set me up for having an injection-epidural steroid- in the area that is having the pain. I go to get this on Tuesday. From -are you ready- Dr. Doctor. I JUST SAID, DR. DOCTOR!!!!!
Let the funny sink in people.
Dr.
Doctor.
Hilarious. I know that's his name, but it has just given me so much joy. I am thinking this injection will either A) not work. or B) work for a limited time only. We will see.
We booked the flight for the Mayo Clinic trip today. Oh yeah, John and I are going there so I can get an accurate diagnosis. Did I mention that the eyes and the spine and the everything are all possibly explained by a connective tissue disorder? I've been in talks with the Mayo Clinic in Rochester, MN and they are confident that the Marfan clinic they have could provide a diagnosis for me and then I could take that info and give the Houston docs something to work with. It's important and a blessing. But I will not get my hopes in it. My hopes are in the Lord. I am thankful for His provision of a place I can go to for possible answers.
Phew. This was a really long post. I've had a lot going on. As Brad said on Rachel Zoe this past week, "I'm Oscar exhausted."
Saturday, September 4, 2010
Leelah Quotes
"I'm starvin' like a bear!"
"Mommy, you know who I love more than my share-bear?" "You and Jesus."
To John on the phone: "How did work go?"
"I need the handitizer (hand sanitizer), I've been touching yucky balls all day!" (YIKES- this was after our game night party with our Bible Study class, although a girlfriend did find her in the men's restroom by herself!!! Great parents!)
"Mommy, you know who I love more than my share-bear?" "You and Jesus."
To John on the phone: "How did work go?"
"I need the handitizer (hand sanitizer), I've been touching yucky balls all day!" (YIKES- this was after our game night party with our Bible Study class, although a girlfriend did find her in the men's restroom by herself!!! Great parents!)
Wednesday, September 1, 2010
Tomorrow Fun...
How is an intramuscular EMG done? From Medicine.net
A needle is inserted through the skin into the muscle. The electrical activity is detected by this needle (which serves as an electrode). The activity is displayed visually on an oscilloscope and may also be detected audibly with a speaker.
Since skeletal muscles are often large, several needle electrodes may need to be placed at various locations to obtain an informative EMG.
After placement of the electrode(s), the patient may be asked to contract the muscle (for example, to bend the leg).
The presence, size, and shape of the wave form (the action potential) produced on the oscilloscope provide information about the ability of the muscle to respond to nervous stimulation. Each muscle fiber that contracts produces an action potential. The size of the muscle fiber affects the rate (how frequently an action potential occurs) and the size (the amplitude) of the action potential.
Or as I like to call what to do on Thursdays!
Today met 3rd opinion for hip. This is a guy who deals with pathological fractures and back surgery. AKA my dad's hip surgeon. And he's in the med center. So now I am going to him. HAd the lumbar spine MRI today b/c they think back is jacked. And tomorrow I will get an EMG done. I've had them before. They are a tad medieval. Fun times, USA! But hey, at least we have good insurance- PRAISE THE LORD!
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