It is with joy that I close out this blog in pursuit of another, much more fun pursuit. I've regained my health and feel years younger than my age, so it's time to kick butt preparing for an ultramarathon? Why? Because I'm the Crazy Ultra Lady...
www.crazyultralady.blogspot.com
See you there!
Tuesday, February 23, 2010
Monday, February 22, 2010
The answer...and the end.
The answer to all my ills over the last year...is wheat, corn, eggs, and aspartame. But mostly wheat. My allergy to egg is an immediate response allergy, though not life threatening at the moment. My allergy to wheat and corn is a delayed response or hypersensitivity. There are no tests for this type of response in the body and can only be found through lucky food challenges.
Wheat is the bond in all my favorite foods, like the pasta in mac and cheese, the crust in pizza, the breading on anything fried. Breakfast can be rather empty without wheat, corn., or eggs Going out to eat can be a very difficult challenge. Candy or other sweets are nearly impossible to find.
Through food challenges, I was able to make all my symptoms comes and go. My favorite was making them GO. And because I've eliminated wheat, my body doesn't seem angry and reactive to most things I would put in my mouth. I can eat most things again, which is a big deal to an equal opportunity foodie.
My goal now includes creating tasty recipes that anybody would want to eat, that just don't happen to have wheat, corn, or eggs. We're coming up with lots of meals in concept. The hard part is that essentially nothing can come from a box or bottle and everything will need to be homemade. But maybe that will just make everything taste better.
My other goal is to finally truly prepare for an ultramarathon. I've wanted to do one at least the last decade, but struggled with always being tired or feeling really rough on my long run day. Of course I now know that carbo loading with pasta when you can't eat wheat...well, I don't think I need to elaborate.
So I'm going to start another blog for myself. So I can track the progress I've made-from thinking I was near the end to training for an ultra. Wish me luck. It worked the last time!
Wheat is the bond in all my favorite foods, like the pasta in mac and cheese, the crust in pizza, the breading on anything fried. Breakfast can be rather empty without wheat, corn., or eggs Going out to eat can be a very difficult challenge. Candy or other sweets are nearly impossible to find.
Through food challenges, I was able to make all my symptoms comes and go. My favorite was making them GO. And because I've eliminated wheat, my body doesn't seem angry and reactive to most things I would put in my mouth. I can eat most things again, which is a big deal to an equal opportunity foodie.
My goal now includes creating tasty recipes that anybody would want to eat, that just don't happen to have wheat, corn, or eggs. We're coming up with lots of meals in concept. The hard part is that essentially nothing can come from a box or bottle and everything will need to be homemade. But maybe that will just make everything taste better.
My other goal is to finally truly prepare for an ultramarathon. I've wanted to do one at least the last decade, but struggled with always being tired or feeling really rough on my long run day. Of course I now know that carbo loading with pasta when you can't eat wheat...well, I don't think I need to elaborate.
So I'm going to start another blog for myself. So I can track the progress I've made-from thinking I was near the end to training for an ultra. Wish me luck. It worked the last time!
Monday, January 25, 2010
More food answers?
I went to see a nutritionist today, at the recommendation of Dr. Ley. He said she would help me make sure I ate healthy food to make up for what I can't eat, and said she might be able to give me some ideas for why I can't eat certain things. I must say I'm amazed.
I told her in conversation that I couldn't eat potatoes as they made me swell up really quickly, all the way to my toes. I also can't eat bell peppers as they make me feel arthritic and cause facial swelling. She said that they are part of the nightshade family. She pulled up some information online while just doing a quick search and we saw lots of articles on foods in the nightshade family causing joint pain and some other things. And that those diagnosed with arthritis are strongly recommended to stop eating any of these types of foods for several months as a lot of people find complete or partial relief from their arthritis symptoms. Well, I'll be.
This goes along with my similar finding with the grass family. I can't eat corn, wheat, cane sugar, etc. and all of those items are in two subspecies in the grass family. I can eat rice, but it's in a different subspecies.
So all of this is starting to make some sense. The foods that give me the most fits are in two food families, and eggs. Both of the times I've gotten sick with this type of thing (the first was over 2 years ago and lasted only a few weeks) I was eating a lot of fast food with wheat and french fries aka potatoes. I was eating a ton of fast food right before I got sick because I was getting the house ready for the moving van. I ate fast food and french fries every single day. Now a simple plain potato or bun causes all sorts of significant health problems.
The pieces of the puzzle are coming together more and more. Hopefully I'll have the endoscopy results soon and maybe some final answers then. Please oh please, and not just for my sanity. My wallet is getting flat.
I told her in conversation that I couldn't eat potatoes as they made me swell up really quickly, all the way to my toes. I also can't eat bell peppers as they make me feel arthritic and cause facial swelling. She said that they are part of the nightshade family. She pulled up some information online while just doing a quick search and we saw lots of articles on foods in the nightshade family causing joint pain and some other things. And that those diagnosed with arthritis are strongly recommended to stop eating any of these types of foods for several months as a lot of people find complete or partial relief from their arthritis symptoms. Well, I'll be.
This goes along with my similar finding with the grass family. I can't eat corn, wheat, cane sugar, etc. and all of those items are in two subspecies in the grass family. I can eat rice, but it's in a different subspecies.
So all of this is starting to make some sense. The foods that give me the most fits are in two food families, and eggs. Both of the times I've gotten sick with this type of thing (the first was over 2 years ago and lasted only a few weeks) I was eating a lot of fast food with wheat and french fries aka potatoes. I was eating a ton of fast food right before I got sick because I was getting the house ready for the moving van. I ate fast food and french fries every single day. Now a simple plain potato or bun causes all sorts of significant health problems.
The pieces of the puzzle are coming together more and more. Hopefully I'll have the endoscopy results soon and maybe some final answers then. Please oh please, and not just for my sanity. My wallet is getting flat.
Saturday, January 23, 2010
Endoscopy Friday
Friday wasn't my best day. I didn't realize how much water I drank first thing in the morning until I couldn't have anything because of the endoscopy. I am used to being able to sneak one or two slugs of water and nobody would know the difference. But because they were going right into my stomach, I knew that they would know if I cheated and didn't want to have to redo the procedure. I figured that them finding a jolly rancher or m&m with the "m" still on it wouldn't be a good thing.
This ended up being a cattle call with 5 of us sitting in a small room with our escorts. Talk about getting cranky with an empty stomach and being thirsty. But the ladies behind the doors were wonderful and made all the difference in the world.
They gave me some phenergan for my nausea (when don't I have it) and it burned from my wrist where the IV started all the way up to my elbow. I wish I had known as it did the same thing in the hospital. Fortunately for me, when they knew how much it really hurt, they jacked up the sleepy-time medicine and the next thing I remember is waking up and being asked to burp.
I slept off and on most of the day and finally woke up long enough to watch a movie. I then went upstairs and slept the rest of it off. I woke up this morning and my arm is swollen from the phenergan, but I can handle that.
Chip said the doc told him my stomach and small intestine looked pristine. I never thought of calling it that, but am glad he didn't see anything abnormal. I have the pictures in my purse. Uh, yuck. I guess they look very healthy from a medical standpoint.
I looked up the pictures of those with celiac disease, which is one thing they are looking for, and saw that my intestine looks like a healthy one and not like one where the celiac is in its destructive phase. That's always good. However, the biopsy is required for almost all cases since many don't go into the destructive phase. That made me feel better, too, since it can take a long time to heal. I want a label and a direction to go in and guidance, not anything bad, if that makes sense.
Now for the wait. When I went to his office he said it would take 2-3 business days, but while at the center, they said it could take a month. Well, that rots, but there isn't a thing I can do about it. In the meantime, I will be avoiding wheat anyway because it made me feel as rotten as can be.
This ended up being a cattle call with 5 of us sitting in a small room with our escorts. Talk about getting cranky with an empty stomach and being thirsty. But the ladies behind the doors were wonderful and made all the difference in the world.
They gave me some phenergan for my nausea (when don't I have it) and it burned from my wrist where the IV started all the way up to my elbow. I wish I had known as it did the same thing in the hospital. Fortunately for me, when they knew how much it really hurt, they jacked up the sleepy-time medicine and the next thing I remember is waking up and being asked to burp.
I slept off and on most of the day and finally woke up long enough to watch a movie. I then went upstairs and slept the rest of it off. I woke up this morning and my arm is swollen from the phenergan, but I can handle that.
Chip said the doc told him my stomach and small intestine looked pristine. I never thought of calling it that, but am glad he didn't see anything abnormal. I have the pictures in my purse. Uh, yuck. I guess they look very healthy from a medical standpoint.
I looked up the pictures of those with celiac disease, which is one thing they are looking for, and saw that my intestine looks like a healthy one and not like one where the celiac is in its destructive phase. That's always good. However, the biopsy is required for almost all cases since many don't go into the destructive phase. That made me feel better, too, since it can take a long time to heal. I want a label and a direction to go in and guidance, not anything bad, if that makes sense.
Now for the wait. When I went to his office he said it would take 2-3 business days, but while at the center, they said it could take a month. Well, that rots, but there isn't a thing I can do about it. In the meantime, I will be avoiding wheat anyway because it made me feel as rotten as can be.
Great official news
January 19, 2010
Dr. Ley called this morning and let me know that the thyroid scan came back showing that the nodules are just hot spots. This was a huge relief. He said that they are so small that it would probably be 20 years before they were big enough to cause me any physical problems, if they didn't self destruct in the meantime. Dr. Ley said said that they may cause me to go into hyperthyroidism so I need to have my thyroid tsh, t3, and t4 tested every year.
The hot spots would explain why my thyroid levels have gradually moved from mid-range into borderline hyperthyroid. My tsh is now very low in the normal range and my t4 is very high in the normal range. I've had both a cardiologist and my former regular doctor of internal medicine tell me that I was borderline hyperthyroid in the last year. I'll just watch them every year during my annual physical. That's something I can easily live with.
Now...onto the endoscopy tomorrow. Sigh.
Dr. Ley called this morning and let me know that the thyroid scan came back showing that the nodules are just hot spots. This was a huge relief. He said that they are so small that it would probably be 20 years before they were big enough to cause me any physical problems, if they didn't self destruct in the meantime. Dr. Ley said said that they may cause me to go into hyperthyroidism so I need to have my thyroid tsh, t3, and t4 tested every year.
The hot spots would explain why my thyroid levels have gradually moved from mid-range into borderline hyperthyroid. My tsh is now very low in the normal range and my t4 is very high in the normal range. I've had both a cardiologist and my former regular doctor of internal medicine tell me that I was borderline hyperthyroid in the last year. I'll just watch them every year during my annual physical. That's something I can easily live with.
Now...onto the endoscopy tomorrow. Sigh.
Friday, January 15, 2010
Preliminary good news
January 15, 2010
I had my thyroid scan done this morning. The test was over quickly so I didn't have to lay there quiet for long. The techs were chatty and so nice so it was a good morning.
While they wouldn't discuss anything with me (as required by law), they did let me see the scans. I saw 3 hot spots on the screen (I believe) and am thrilled. The hot spots would be overactive thyroid tissue and would mean no surgery. Dr. Ley had mentioned that we would test my thyroid every year if they were hot spots. I went online and did some research and it does make sense. My levels are going more towards hyperthyroidism over the last 10 years, and have had two doctors tell me I was borderline hyperthyroid on two occassions over the last 1 1/2 years, but then my levels would bounce back a tad and just be normal high instead of borderline.
So what I'm hoping to hear next week is that we'll watch my thyroid every year and expect that I may need additional treatment for hyperthyroidism at some point, but that the cancer scare is behind us for now. That would be the best news ever...well, except that I can eat whatever I want again. THAT would tie for the best news ever.
I had my thyroid scan done this morning. The test was over quickly so I didn't have to lay there quiet for long. The techs were chatty and so nice so it was a good morning.
While they wouldn't discuss anything with me (as required by law), they did let me see the scans. I saw 3 hot spots on the screen (I believe) and am thrilled. The hot spots would be overactive thyroid tissue and would mean no surgery. Dr. Ley had mentioned that we would test my thyroid every year if they were hot spots. I went online and did some research and it does make sense. My levels are going more towards hyperthyroidism over the last 10 years, and have had two doctors tell me I was borderline hyperthyroid on two occassions over the last 1 1/2 years, but then my levels would bounce back a tad and just be normal high instead of borderline.
So what I'm hoping to hear next week is that we'll watch my thyroid every year and expect that I may need additional treatment for hyperthyroidism at some point, but that the cancer scare is behind us for now. That would be the best news ever...well, except that I can eat whatever I want again. THAT would tie for the best news ever.
Thursday, January 14, 2010
January 14, 2010
I went to see Dr. Ley late last week to discuss whether he thought I was healthy enough to have my thyroid nodule removed or not. He ended up doing another ultrasound and I found out that there are two nodules he doesn't like, though one is in his really dislike column. Because of my "sensitive" nature with food and medication, he really doesn't want to perform the surgery unless it's really necessary. I understand and I'm sure that my insurance company is very happy to hear that, too. He decided to send me for a thyroid scan, which will happen tomorrow morning. So how did he come to this decision? Well, let me tell you...
I had to lay still without speaking for a long time while he performed the ultrasound, taking lots of pictures. Laying there isn't bad, and not speaking isn't bad, but both expected at the same time is torture for me. We won't even discuss the gel that gets squirted all over your neck. ew.
Dr. Ley started showing me the pictures and said he had a lot of concerns about these nodules, even though they are so small. The edges are not uniform, they are full of calcifications (one having a normal kind, and the other a not good kind?), and they are exceptionally vascular. They light up the screen nearly as much as the large artery or vein on the screen. He said that normally they wouldn't do a thing with nodules this tiny, but because of these factors and especially the vascularity, he thinks that the probabilities tilt more towards cancer than not.
The only other thing he thinks it could be are that these nodules are hot spots. Normally the thyroid or parts of it turn on and off as the need for hormones changes. Some areas can turn permanently on, which makes the other parts turn off, so the vascularity would increase to these hot spots as they are doing all of the activity. If this is the case, my blood work would look normal, even though the thyroid wasn't functioning normally, because these areas would produce everything my body would need. Actually, almost more than my body would need since my levels are nearly hyperthyroid.
Anyway, Dr. Ley said that the scan would show if the nodules are indeed hot spots (they will absorb most of the iodine and show up as bright points of light), at which point he would leave them alone. However, if the nodules show cold or little absorption of the iodine, ( they will not absorb most or any of the iodine and show up as dark spots), then he really wants them gone. He is no longer wishy washy at all, which makes me sure we're doing the right thing, but also causes me some alarm. I guess I'm just tired of having this discussion and am ready for action. I'm just grateful I trust him to take the right action, whatever that might be.
Dr. Ley told me that he was happy to see me feeling better. I was so full of energy that day I literally wanted to run laps in the room. I told him that it was nice to have him see me feeling so good since he was one of the few to see me at my lowest point in the hospital last summer. He smiled and said "And I believed you then, too." It reminded me of how grateful I am to have finally met a doctor who believed that there was something wrong physically, not something wrong in my head. Now while my problems seem to originate from food reactions and not endocrinology problems, he helped guide me to where I am now. He reminded me at each step to not look for every little sign to figure out what was causing this, but to enjoy each day as much as I could, then take notice when something was really different. Without that little nugget, I don't know that I would have noticed the food reactions, which has led me down this path. I also told him that I thought my whole summer was part of some grand plan to lead us to find these nodules. Without my hospital stay and my swearing something was wrong with my thyroid, we wouldn't have found them. I'm hoping that all we really find is two bright spots on the scan I can name the teeny weeny hot spot and the itty bitty hot spot, but have faith that we'll be able to handle whatever comes my way.
Wish me luck for tomorrow. I have to lay still.
I went to see Dr. Ley late last week to discuss whether he thought I was healthy enough to have my thyroid nodule removed or not. He ended up doing another ultrasound and I found out that there are two nodules he doesn't like, though one is in his really dislike column. Because of my "sensitive" nature with food and medication, he really doesn't want to perform the surgery unless it's really necessary. I understand and I'm sure that my insurance company is very happy to hear that, too. He decided to send me for a thyroid scan, which will happen tomorrow morning. So how did he come to this decision? Well, let me tell you...
I had to lay still without speaking for a long time while he performed the ultrasound, taking lots of pictures. Laying there isn't bad, and not speaking isn't bad, but both expected at the same time is torture for me. We won't even discuss the gel that gets squirted all over your neck. ew.
Dr. Ley started showing me the pictures and said he had a lot of concerns about these nodules, even though they are so small. The edges are not uniform, they are full of calcifications (one having a normal kind, and the other a not good kind?), and they are exceptionally vascular. They light up the screen nearly as much as the large artery or vein on the screen. He said that normally they wouldn't do a thing with nodules this tiny, but because of these factors and especially the vascularity, he thinks that the probabilities tilt more towards cancer than not.
The only other thing he thinks it could be are that these nodules are hot spots. Normally the thyroid or parts of it turn on and off as the need for hormones changes. Some areas can turn permanently on, which makes the other parts turn off, so the vascularity would increase to these hot spots as they are doing all of the activity. If this is the case, my blood work would look normal, even though the thyroid wasn't functioning normally, because these areas would produce everything my body would need. Actually, almost more than my body would need since my levels are nearly hyperthyroid.
Anyway, Dr. Ley said that the scan would show if the nodules are indeed hot spots (they will absorb most of the iodine and show up as bright points of light), at which point he would leave them alone. However, if the nodules show cold or little absorption of the iodine, ( they will not absorb most or any of the iodine and show up as dark spots), then he really wants them gone. He is no longer wishy washy at all, which makes me sure we're doing the right thing, but also causes me some alarm. I guess I'm just tired of having this discussion and am ready for action. I'm just grateful I trust him to take the right action, whatever that might be.
Dr. Ley told me that he was happy to see me feeling better. I was so full of energy that day I literally wanted to run laps in the room. I told him that it was nice to have him see me feeling so good since he was one of the few to see me at my lowest point in the hospital last summer. He smiled and said "And I believed you then, too." It reminded me of how grateful I am to have finally met a doctor who believed that there was something wrong physically, not something wrong in my head. Now while my problems seem to originate from food reactions and not endocrinology problems, he helped guide me to where I am now. He reminded me at each step to not look for every little sign to figure out what was causing this, but to enjoy each day as much as I could, then take notice when something was really different. Without that little nugget, I don't know that I would have noticed the food reactions, which has led me down this path. I also told him that I thought my whole summer was part of some grand plan to lead us to find these nodules. Without my hospital stay and my swearing something was wrong with my thyroid, we wouldn't have found them. I'm hoping that all we really find is two bright spots on the scan I can name the teeny weeny hot spot and the itty bitty hot spot, but have faith that we'll be able to handle whatever comes my way.
Wish me luck for tomorrow. I have to lay still.
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