The past two weeks have been stressful and frustrating. A week ago Sunday I was getting ready for church, and practicing a song I was to play on the piano that day. While I was playing I started to go numb in my hands, feet, and face. I thought that was weird, and by the end of the day the numbness and tingling had moved up my arms and legs, and was feeling pretty intense. I couldn't believe it! Could the Guillaine-Barre Syndrome (GBS) be coming back?
I researched in online (of course, as I always do), and found that GBS doesn't recur often- only 3-5% of the time. I knew I needed to figure out what was going on, though. I skipped my Monday morning run, and was able to get in with my family doctor, hoping for a referral to a neurologist. The doctor was very helpful and concerned, and he helped me get an appointment with a neurologist. I wasn't able to get in for a few weeks, but felt reassured that I could get more immediate attention if I felt like the symptoms were getting worse.
The wait was an emotional roller coaster. Some days I physically felt worse than others, and the whole time I wondered if I would end up in the hospital again. I was unsure if I'd have the energy to teach my piano lessons or do the piano camp that I had planned for last week. I decided to plow my way through it, and was physically exhausted by the end of the day. It was stressful, but I made it.
My appointment with the neurologist was yesterday afternoon, and I was nervous going to it. I don't trust doctors very much, and was worried I'd get an arrogant, cold doctor (that's how I think of specialists). Thankfully that wasn't the case. I saw Dr. Noah Kolb at a "U" clinic in Park City, and he was awesome. Jimmy and I laughed, because it makes you feel old when the specialist is younger than you.
He was a nice guy, though. Very thorough on the details as he took my history over the last year, and asking questions about my family's history of Charcot-Marie-Tooth Syndrome (a neurological disorder that runs on my dad's side of the family, that I don't have).
He did various strength tests, and he was surprised by how strong I was. He asked if I worked out :). This was weird, considering that I feel weak, and my arms and legs kind of feel like I'm lifting logs as I move them. He also tested my feeling by poking me various places with a pin. He also tested my reflexes, which were fine. He had a tool kind of like a tuning fork that he made vibrate, had me close my eyes, then he held it on to my arms/leg to see how long I could feel it vibrate. One time I could still feel after a long time, and he said that he couldn't even feel it anymore, so he was going to stop. Again, weird if I was feeling numb. How could I feel it so long?
In the end he said that I was just having a relapse of symptoms, but that it wasn't like a new bout with GBS. He said that was somewhat common, for someone who had had GBS to have a recurrence of symptoms later, triggered by something. He asked if I had been sick in the last month, and I had. I had a bad cold toward the middle of June. He said he thought that was the trigger. I mentioned that I had run Ragnar, and wondered if that had been part of the problem, considering how I pushed myself to exhaustion in the heat. He laughed and said no, that Ragnar was actually a great thing to have done. YES!!!!! Music to my ears. The best part was that Jimmy was there to hear it. He was convinced that Ragnar had caused my relapse, and I was worried my running days were over. In fact, he said that I should try to get out & be active as soon as I felt able and it would be good for me. YES! The best news ever!
I asked him if my symptoms could be Multiple Sclerosis (MS), because some of them matched up. He said no, because my symptoms were on both sides of the body, and MS usually occurs on one side, then works it's way around the body. MORE good news!
He ended up scheduling me for a EMG next month, some sort of electrical test that will test my nerve pathways. It's basically to give us a baseline for where I'm at right now, in case I start having these symptoms again later on.
When I got home I got on my computer and started researching (of course). At first I still couldn't find much about what I was going through, except for info on those who get it again and have to be treated again. I stumbled on the words "Residual Effects", and that was the key. It turns out that many people who have GBS have recurring symptoms, months or years later after having no symptoms at all. There isn't a lot of research on it because it's hard to study. But there are more & more reports out there to show this is the case.
Articles I found show that it's not the muscles that get weak, but because the Axons in the nerves have been damaged. The nerves have made repairs by branching out in different ways that before... many smaller branches, but they are weaker so can be damaged easier if overloaded.
A couple of very interesting things I found: They said often people will muscle test strong, in fact stronger than normal because the muscle fibers have increased, due to the increased nerve fibers (or something like that. Kind of hard to sift through the medical jargon). The weakness is from the nerves not firing properly (thus my strength surprising the doctor). It also said that people with relapse can have higher sensitivity (said technical terms that I don't quite understand, but thus my being able to feel that tuning fork vibration for so long). I think I'll make a copy of the article I read and send it to the neurologist & see what he has to say about it. Sounded spot on.
Hopefully I'll start to feel better soon, and get back to running. The doctor mentioned that now that I know it's not a full blown relapse that will be serious, maybe I will quit worrying and it will help me get better sooner. I pray that is the case.
Tuesday, July 16, 2013
Sunday, June 23, 2013
Good-bye Crazy Year. Onward & Upward!
So, it's now been a year since I got sick. This anniversary has really made me think about everything, and count my blessings. I know it's kind of weird, but I'm grateful for this trial and what I've learned from it. Here's a list of some of the things I've learned:
1. You can live as healthy as possible, eating all the "right foods", cutting out all things that are bad, and still get sick. Really sick. Nothing is guaranteed. And? I need to chill about the eating. Balance is good.
2. I've learned to think more seriously about the statistics that are thrown around. For example, when they say only 1% experience this or that side effect, you think it will never happen to you. Well, I was one of the .0001 % who get Guillaine-Barre Syndrome (GBS). The small percent is real.
3. I've learned to have more sympathy for others who have any sort of illness. I hear their stories and I feel more sympathy & compassion than I would have before. I think this is part of the Lord's plan as we go through trials- to experience something and become more empathetic.
4. I've learned that doctors don't know everything, and sometimes you need to go with your instincts. If I hadn't gotten treatment when I did, I could have gotten to the point of paralysis and recovery could have been so much worse.
5. I've learned that my love for researching things on the computer can really come in handy (it's how I figured out my symptoms of numb hands, feet, and lips were probably GBS).
6. I've learned that the psychological healing can take longer than the physical healing. Until recently I haven't been able to go back to super healthy eating. The thought of it would give me major anxiety. Last week, though, for some reason I was able to wrap my head around going sugar-free again, and I've been fine with it. In fact, it's been kind of easy. It doesn't take any extra work to take something away, so I figure it's a great start. I've lost a couple of pounds... we'll see if it's lasting or temporary.
7. I've learned that going back to eating sugar & gluten can make you gain the weight back... and fast. I gained back the 25 I lost plus 5 more. Frustrating, but humbling. I'm hopeful that sugar-free eating will help me get back to a healthier weight.
8. I've learned more appreciation for really good friends, who have stuck with me through my recovery. They really helped me out, especially as I was going through the worst of it last year. This past weekend we were able to run the Wasatch Back Ragnar Relay together as a team, and it was a lot of fun. Love these girls!
1. You can live as healthy as possible, eating all the "right foods", cutting out all things that are bad, and still get sick. Really sick. Nothing is guaranteed. And? I need to chill about the eating. Balance is good.
2. I've learned to think more seriously about the statistics that are thrown around. For example, when they say only 1% experience this or that side effect, you think it will never happen to you. Well, I was one of the .0001 % who get Guillaine-Barre Syndrome (GBS). The small percent is real.
3. I've learned to have more sympathy for others who have any sort of illness. I hear their stories and I feel more sympathy & compassion than I would have before. I think this is part of the Lord's plan as we go through trials- to experience something and become more empathetic.
4. I've learned that doctors don't know everything, and sometimes you need to go with your instincts. If I hadn't gotten treatment when I did, I could have gotten to the point of paralysis and recovery could have been so much worse.
5. I've learned that my love for researching things on the computer can really come in handy (it's how I figured out my symptoms of numb hands, feet, and lips were probably GBS).
6. I've learned that the psychological healing can take longer than the physical healing. Until recently I haven't been able to go back to super healthy eating. The thought of it would give me major anxiety. Last week, though, for some reason I was able to wrap my head around going sugar-free again, and I've been fine with it. In fact, it's been kind of easy. It doesn't take any extra work to take something away, so I figure it's a great start. I've lost a couple of pounds... we'll see if it's lasting or temporary.
7. I've learned that going back to eating sugar & gluten can make you gain the weight back... and fast. I gained back the 25 I lost plus 5 more. Frustrating, but humbling. I'm hopeful that sugar-free eating will help me get back to a healthier weight.
8. I've learned more appreciation for really good friends, who have stuck with me through my recovery. They really helped me out, especially as I was going through the worst of it last year. This past weekend we were able to run the Wasatch Back Ragnar Relay together as a team, and it was a lot of fun. Love these girls!
9. I've learned that some people in the "whole foods" world are extreme, and are living in denial. I feel they can be as bad as those "evil" people they preach against. That's been part of the psychological struggle for me- knowing who to trust. And getting over the hurt for feeling betrayed.
10. I've learned that I can be strong and healthy, even when I'm 30 pounds heavier than I want to be. In the relay I did 3 legs: 4.8 miles, 7.7 miles, and 4 miles straight up a mountainside. I felt great! I could only speed walk the hill, but I still went pretty fast. The reason I'm putting this one is that I'm learning to love my body at any shape, not just at the ideal weight. I still want to lose weight again, mind you, but I'm learning to accept myself more.
I plan to start writing in my blog more, and document the trip back.
Thursday, March 14, 2013
Wow! I can Actually Post? Unfrozen.
I haven't posted for a very long time because for some reason my account was blocked. I have no idea why, and tried for a month to get it figured out, with no luck. Then life goes on, and out of sight, out of mind.
It's hard to believe it's been 8 months since I got sick with Campylobacter, and then got Guillaine-Barre Syndrome. (See my last entry). I've been symptom free since December, and am still trying to regain the strength that I lost. I was at such a good place physically before my illness, then BOOM. Crash. I experienced some humble pie and was brought pretty much to 0 (0 being an inactive person, 10 being very fit and active).
I was nervous to push my exercise too hard, knowing that my nerves were repairing. I had read that you could damage other muscle cells by over compensating with the nerves that could actually fire. Now I feel I'm pretty much back to normal, but have to get the motivation to get back at it. I have been able to start running again, but have been keeping it very simple over the winter, running 3 times a week, 3-6 miles each time. I'm ready to push it to 4 days a week, but running is a lot harder now because I've gained back the weight that I had lost. I started drinking pasteurized milk again, and while in the hospital I had some sugar, and it was downhill from there. I still mostly avoid wheat, but do eat bread occasionally.
I guess I need to change my blog title. Maybe to "Jan Moderation in All Things", or "The Lord is really the one in Charge, Even if You Think You Can Control Your Life". After being sick I got really angry at the whole "holistic nutrition" world. Some told me that there was "no way it could've been the milk". That I was just being "the victim", and that I should toughen up. Seriously? Here they get mad at all things government , and act like we're being duped and scammed, but then they treat people who question their thoughts the same way! I still prefer a whole foods diet, but take everything I read with a grain of salt. People get so worked up about things. But really, there are more pressing matters in this world, and I've decided food is one matter I will do with moderation. I love being healthy, and still do some of the things I've written about in my blog, but I'm not going to go crazy over it, and let it over power my life. I'm grateful to my Heavenly Father for letting have this experience, to be humbled, and see that there are more important things in life to put my energy toward.
It's hard to believe it's been 8 months since I got sick with Campylobacter, and then got Guillaine-Barre Syndrome. (See my last entry). I've been symptom free since December, and am still trying to regain the strength that I lost. I was at such a good place physically before my illness, then BOOM. Crash. I experienced some humble pie and was brought pretty much to 0 (0 being an inactive person, 10 being very fit and active).
I was nervous to push my exercise too hard, knowing that my nerves were repairing. I had read that you could damage other muscle cells by over compensating with the nerves that could actually fire. Now I feel I'm pretty much back to normal, but have to get the motivation to get back at it. I have been able to start running again, but have been keeping it very simple over the winter, running 3 times a week, 3-6 miles each time. I'm ready to push it to 4 days a week, but running is a lot harder now because I've gained back the weight that I had lost. I started drinking pasteurized milk again, and while in the hospital I had some sugar, and it was downhill from there. I still mostly avoid wheat, but do eat bread occasionally.
I guess I need to change my blog title. Maybe to "Jan Moderation in All Things", or "The Lord is really the one in Charge, Even if You Think You Can Control Your Life". After being sick I got really angry at the whole "holistic nutrition" world. Some told me that there was "no way it could've been the milk". That I was just being "the victim", and that I should toughen up. Seriously? Here they get mad at all things government , and act like we're being duped and scammed, but then they treat people who question their thoughts the same way! I still prefer a whole foods diet, but take everything I read with a grain of salt. People get so worked up about things. But really, there are more pressing matters in this world, and I've decided food is one matter I will do with moderation. I love being healthy, and still do some of the things I've written about in my blog, but I'm not going to go crazy over it, and let it over power my life. I'm grateful to my Heavenly Father for letting have this experience, to be humbled, and see that there are more important things in life to put my energy toward.
Saturday, June 23, 2012
Why My Family and I will NEVER Drink Raw Milk Again
In college I was taught to avoid unpasteurized milk.
My microbiologist dad said I shouldn't feed my family raw milk.
The government said I shouldn't drink raw milk.
But I chose to ignore them. And I am paying for it.
My interest in raw milk began about 2 1/2 years ago when my youngest daughter, Shiloh, was being weaned. I had been giving her pasteurized whole milk, and she was having horrible diaper rash. I decided to try her on raw milk, and the rash went away. Amazing. I kept her on raw milk for about 6 months, but then switched back to regular pasteurized milk because of the cost.
Then last August, when I made a dramatic diet change, I made the switch to raw milk for my whole family. ALL of the 'whole foods' websites that I enjoy reading recommend raw milk. It was a big change in our budget- spending $20-$25 on milk each week, instead of $12-15 a week, but I decided that it was worth it.
To tell you the truth, I didn't spend much time researching the risks. I just quickly signed the form at the dairy & the health store that stated that I understood the risks of drinking the milk.
I began coming down with symptoms last Saturday evening. It had been a very busy day. I helped out at the Wasatch Back Ragnar from 5:45 am until 9:30 am, and then I helped the RMMS PTA with their fundraiser. I was at the laundromat washing & drying towels until about 4 pm. By the time I was done, I was uncharacteristically famished. I felt like I had had run the Ragnar! I started to have diarrhea, and went to bed at 8 pm. At this point I figured I had caught a bug from one of my piano families. One of the mom's, my friend Serena, had come in for part of a lesson the week before, and she was on the tail end of being sick with diarrhea for five days. Her son had been sick, too, for seven days.
The next day was Father's Day, so I got up & got breakfast together for my husband. I was going to go to church, but I was having stomach cramping that would come & go. I didn't want to make anyone sick, so I decided at the last minute to stay home. My 10-year old daughter Janessa had been having some stomach cramping, too, so I had her stay home with me. I was tired, and my stomach was getting really sore. I had developed a fever, and started to get a headache. I was really glad that I had the time to just lay down, because I was really beat and didn't feel like doing anything. I was hopeful that I would feel better by morning, so I didn't cancel my piano lessons scheduled the next day.
I woke up Monday, and didn't feel any better. I ended up cancelling my lessons, and was in bed the entire day. I was trying to stay hydrated, but I didn't feel like eating much because it would go straight through me and would cause cramping. I drank some Gatorade, which definitely gave me a boost of energy, but I hated it. Here I was drinking in all those nasty chemicals that I had been avoiding for so long. By that night, I still didn't feel better, so once again, I cancelled my lessons for the next day.
During the night I noticed that my diarrhea had blood in it. I GOOGLED it, and read that I should go to the doctor once you had blood in your stool. That morning I was kind of wobbly when I would stand up, so I had Jimmy take me to the walk-in clinic at the hospital. After questions & exam the doctor said it was probably an infection in the intestine, but they were going to do a stool sample to make sure they treated me in the right way. I decided to do the sample while I was there, so I didn't have to bring it back later, and my urine looked red! So I was told the doctor I thought I might have blood in my urine, too. He took a sample of it, too. Of course the second time I tried to pee I didn't see red, and the quick result only located a trace. The doc said we would need to wait 2-3 days for results, but if anything changed, come right in because it could be serious.
Jimmy dropped me off at home and went to work, and I spent the rest of the day in bed (in between running back and forth to the bathroom.) One of my sweet friends Kim went and got some groceries for me, and helped entertain the kids by renting the kids a Red Box, and bought them milk shakes. It drained me to do anything. That evening I didn't feel any better, so I called & cancelled piano for the morning. I also texted my brother. I was supposed to be having a family reunion up at my house that weekend, and now I wasn't so sure! I texted Serena to cancel piano lessons, and then I told her I thought I had what she had & asked her how long it lasted. She told me (5 & 7 days), and apologized. I said that's just how things go, and said I was surprised we could get it from seeing for such a short time. She reminded me that my 10-yr old had gone and played at her house the Saturday right before she got it, so that is probably the connection. I said that made sense. Then that night, I woke in the middle of the night and it came to me. She's one of my friends that I talk about food with all of the time. She probably drinks raw milk, too!
The next morning (Wednesday) I had no change. In fact, I tended to feel worse in the morning... more headache, and more stomach cramps. I texted Serena and asked her which dairy she got her milk from, because there are two places around here that sell raw milk. She said the Midway Creamery, which is where I had bought the milk I'd been using most recently! I told her I thought the milk was the connection, not getting it air-borne.
I have some of the greatest friends in the world. Kim made lunch for us- two different types of chicken noodle soup. A gluten-free for me, and one with nice chewy noodles for the kids. I had them save it, though, and eat it the next day for breakfast, because another friend, Liz Passey, gave them a ride to the free-school lunch summer program at Heber Valley Elementary. It was so nice of her to offer. And then yet another friend, Mary Lou, made dinner for my family. I couldn't eat it, but they devoured theirs. Even though I had such help, my day was worse than before. My breathing had become a bit labored, and when I would speak my throat would kind of constrict & I would cough. That afternoon I had a really emotional time. I was feeling so lousy, and I was really discouraged. Here I was, trying to live so healthily... shouldn't that count for something? And then I'd feel guilty that I was so bummed. And then I was stressing about my running. I was supposed to be doing a race on the 30th, and I had trained so hard for it. I had to take the week before off because of my heel, but it was feeling better & I was supposed to start training again on Monday. And now it was looking hopeless. I texted all my family members and told them the reunion was postponed until further notice, most likely August. A bunch of downers, which led to a bunch of tears.
I calmed down, and was sitting in a recliner early that evening when I noticed that my lips were numb. The whole day I had struggled keeping my feet warm, and it dawned on my that my feet were numb. I went to reach for my phone and then noticed that my fingers were numb! This was freaky. I tried calling my mom, a nurse, to see if she had heard of this. Couldn't get a hold of her. Tried a few others, then decided that this was the change to watch for that the doctor had mentioned, so it was time for me to go in again. I saw a different Dr. this time- Dr. Tullis. I told him why I was there, and that I now thought the connection was raw milk. He said that he had treated someone a few weeks earlier who had Campylobacter, and they got it from raw milk the Midway Creamery! He said that even though my results weren't back, all my symptoms were the same as theirs, so he felt he should give me the same antibiotic, especially because I was getting worse. He said I should see a big improvement, fast.
I filled the prescription, and took the pills at about 8:00pm. I ate, too, and about 15 minutes later I had to rush to the bathroom for a b.m. Oh great. I was worried that I should set up camp on the toilet, if that was any indicator what the medicine would do to me. Instead I laid down, and I could actually feel the antibiotic moving through my body! It was slow & steady, and I could feel it calming the achiness around my gut. It was amazing. I woke up an hour or so later & could feel that it had opened up my sinuses, and my neck pain was easing. I had no idea my sinuses were blocked. I didn't sleep much the rest of the night, but it was an amazing experience, feeling everything going on and being hyper aware of it. (I will be taking Dr. Tullis cookies!)
By the time I got up in the morning, I felt at least 60% better than the night before. I was ecstatic! Now to just heal. I still hadn't heard what my lab results were, so I called the doctor to find out. He said that it was Campylobacter, which is passed on by food. This confirmed it- more sure it was the Midway milk! My 7-yr old had come down with a fever & diarrhea on Tuesday night, and he was able to give her a prescription for the antibiotic without seeing her. My husband had taken Friday off because of the reunion we were supposed to be hosting, so he decided to take the kids (minus sicky) hiking in the Unintahs for the day. Once he got packed & left I was able to sit down for a minute and research Campylobacter. I typed it into Google, and the first result that I looked up was from the Center for Disease Control (CDC). I'm reading along, no problem until I get to the Are There Long Term Consequences? section.
It says:
What the!!!! So the next step is researching Guillian-Barre symdrome. Here are bits of what I found:
From WebMD:
My microbiologist dad said I shouldn't feed my family raw milk.
The government said I shouldn't drink raw milk.
But I chose to ignore them. And I am paying for it.
My interest in raw milk began about 2 1/2 years ago when my youngest daughter, Shiloh, was being weaned. I had been giving her pasteurized whole milk, and she was having horrible diaper rash. I decided to try her on raw milk, and the rash went away. Amazing. I kept her on raw milk for about 6 months, but then switched back to regular pasteurized milk because of the cost.
Then last August, when I made a dramatic diet change, I made the switch to raw milk for my whole family. ALL of the 'whole foods' websites that I enjoy reading recommend raw milk. It was a big change in our budget- spending $20-$25 on milk each week, instead of $12-15 a week, but I decided that it was worth it.
To tell you the truth, I didn't spend much time researching the risks. I just quickly signed the form at the dairy & the health store that stated that I understood the risks of drinking the milk.
I began coming down with symptoms last Saturday evening. It had been a very busy day. I helped out at the Wasatch Back Ragnar from 5:45 am until 9:30 am, and then I helped the RMMS PTA with their fundraiser. I was at the laundromat washing & drying towels until about 4 pm. By the time I was done, I was uncharacteristically famished. I felt like I had had run the Ragnar! I started to have diarrhea, and went to bed at 8 pm. At this point I figured I had caught a bug from one of my piano families. One of the mom's, my friend Serena, had come in for part of a lesson the week before, and she was on the tail end of being sick with diarrhea for five days. Her son had been sick, too, for seven days.
The next day was Father's Day, so I got up & got breakfast together for my husband. I was going to go to church, but I was having stomach cramping that would come & go. I didn't want to make anyone sick, so I decided at the last minute to stay home. My 10-year old daughter Janessa had been having some stomach cramping, too, so I had her stay home with me. I was tired, and my stomach was getting really sore. I had developed a fever, and started to get a headache. I was really glad that I had the time to just lay down, because I was really beat and didn't feel like doing anything. I was hopeful that I would feel better by morning, so I didn't cancel my piano lessons scheduled the next day.
I woke up Monday, and didn't feel any better. I ended up cancelling my lessons, and was in bed the entire day. I was trying to stay hydrated, but I didn't feel like eating much because it would go straight through me and would cause cramping. I drank some Gatorade, which definitely gave me a boost of energy, but I hated it. Here I was drinking in all those nasty chemicals that I had been avoiding for so long. By that night, I still didn't feel better, so once again, I cancelled my lessons for the next day.
During the night I noticed that my diarrhea had blood in it. I GOOGLED it, and read that I should go to the doctor once you had blood in your stool. That morning I was kind of wobbly when I would stand up, so I had Jimmy take me to the walk-in clinic at the hospital. After questions & exam the doctor said it was probably an infection in the intestine, but they were going to do a stool sample to make sure they treated me in the right way. I decided to do the sample while I was there, so I didn't have to bring it back later, and my urine looked red! So I was told the doctor I thought I might have blood in my urine, too. He took a sample of it, too. Of course the second time I tried to pee I didn't see red, and the quick result only located a trace. The doc said we would need to wait 2-3 days for results, but if anything changed, come right in because it could be serious.
Jimmy dropped me off at home and went to work, and I spent the rest of the day in bed (in between running back and forth to the bathroom.) One of my sweet friends Kim went and got some groceries for me, and helped entertain the kids by renting the kids a Red Box, and bought them milk shakes. It drained me to do anything. That evening I didn't feel any better, so I called & cancelled piano for the morning. I also texted my brother. I was supposed to be having a family reunion up at my house that weekend, and now I wasn't so sure! I texted Serena to cancel piano lessons, and then I told her I thought I had what she had & asked her how long it lasted. She told me (5 & 7 days), and apologized. I said that's just how things go, and said I was surprised we could get it from seeing for such a short time. She reminded me that my 10-yr old had gone and played at her house the Saturday right before she got it, so that is probably the connection. I said that made sense. Then that night, I woke in the middle of the night and it came to me. She's one of my friends that I talk about food with all of the time. She probably drinks raw milk, too!
The next morning (Wednesday) I had no change. In fact, I tended to feel worse in the morning... more headache, and more stomach cramps. I texted Serena and asked her which dairy she got her milk from, because there are two places around here that sell raw milk. She said the Midway Creamery, which is where I had bought the milk I'd been using most recently! I told her I thought the milk was the connection, not getting it air-borne.
I have some of the greatest friends in the world. Kim made lunch for us- two different types of chicken noodle soup. A gluten-free for me, and one with nice chewy noodles for the kids. I had them save it, though, and eat it the next day for breakfast, because another friend, Liz Passey, gave them a ride to the free-school lunch summer program at Heber Valley Elementary. It was so nice of her to offer. And then yet another friend, Mary Lou, made dinner for my family. I couldn't eat it, but they devoured theirs. Even though I had such help, my day was worse than before. My breathing had become a bit labored, and when I would speak my throat would kind of constrict & I would cough. That afternoon I had a really emotional time. I was feeling so lousy, and I was really discouraged. Here I was, trying to live so healthily... shouldn't that count for something? And then I'd feel guilty that I was so bummed. And then I was stressing about my running. I was supposed to be doing a race on the 30th, and I had trained so hard for it. I had to take the week before off because of my heel, but it was feeling better & I was supposed to start training again on Monday. And now it was looking hopeless. I texted all my family members and told them the reunion was postponed until further notice, most likely August. A bunch of downers, which led to a bunch of tears.
I calmed down, and was sitting in a recliner early that evening when I noticed that my lips were numb. The whole day I had struggled keeping my feet warm, and it dawned on my that my feet were numb. I went to reach for my phone and then noticed that my fingers were numb! This was freaky. I tried calling my mom, a nurse, to see if she had heard of this. Couldn't get a hold of her. Tried a few others, then decided that this was the change to watch for that the doctor had mentioned, so it was time for me to go in again. I saw a different Dr. this time- Dr. Tullis. I told him why I was there, and that I now thought the connection was raw milk. He said that he had treated someone a few weeks earlier who had Campylobacter, and they got it from raw milk the Midway Creamery! He said that even though my results weren't back, all my symptoms were the same as theirs, so he felt he should give me the same antibiotic, especially because I was getting worse. He said I should see a big improvement, fast.
I filled the prescription, and took the pills at about 8:00pm. I ate, too, and about 15 minutes later I had to rush to the bathroom for a b.m. Oh great. I was worried that I should set up camp on the toilet, if that was any indicator what the medicine would do to me. Instead I laid down, and I could actually feel the antibiotic moving through my body! It was slow & steady, and I could feel it calming the achiness around my gut. It was amazing. I woke up an hour or so later & could feel that it had opened up my sinuses, and my neck pain was easing. I had no idea my sinuses were blocked. I didn't sleep much the rest of the night, but it was an amazing experience, feeling everything going on and being hyper aware of it. (I will be taking Dr. Tullis cookies!)
By the time I got up in the morning, I felt at least 60% better than the night before. I was ecstatic! Now to just heal. I still hadn't heard what my lab results were, so I called the doctor to find out. He said that it was Campylobacter, which is passed on by food. This confirmed it- more sure it was the Midway milk! My 7-yr old had come down with a fever & diarrhea on Tuesday night, and he was able to give her a prescription for the antibiotic without seeing her. My husband had taken Friday off because of the reunion we were supposed to be hosting, so he decided to take the kids (minus sicky) hiking in the Unintahs for the day. Once he got packed & left I was able to sit down for a minute and research Campylobacter. I typed it into Google, and the first result that I looked up was from the Center for Disease Control (CDC). I'm reading along, no problem until I get to the Are There Long Term Consequences? section.
It says:
Are there long-term consequences?
Most people who get campylobacteriosis recover completely within two to five days, although sometimes recovery can take up to 10 days. Rarely, Campylobacter infection results in long-term consequences. Some people develop arthritis. Others may develop a rare disease called Guillain-Barré syndrome that affects the nerves of the body beginning several weeks after the diarrheal illness. This occurs when a person's immune system is "triggered" to attack the body's own nerves resulting in paralysis that lasts several weeks and usually requires intensive care. It is estimated that approximately one in every 1,000 reported Campylobacter illnesses leads to Guillain-Barré syndrome. As many as 40% of Guillain-Barré syndrome cases in this country may be triggered by campylobacteriosis.
What the!!!! So the next step is researching Guillian-Barre symdrome. Here are bits of what I found:
From WebMD:
What is Guillain-Barré syndrome (GBS)?
Guillain-Barré syndrome (say "ghee-YAN bah-RAY") is a problem with your nervous system. It causes muscle weakness, loss of reflexes, and numbness or tingling in your arms, legs, face, and other parts of your body.
Guillain-Barré syndrome (GBS) can cause paralysis and lead to death. But most people get better and have few lasting problems.
Symptoms usually start with numbness or tingling in the fingers and toes. Over several days, muscle weakness in the legs and arms develops. After about 4 weeks, most people begin to get better.
You may need to be treated in the hospital for the first few weeks. This is because GBS can be deadly if weakness spreads to muscles that control breathing, heart rate, and blood pressure.
Call your doctor or get help right away if you think you might have GBS.
From Wikipedia:
Guillain–Barré syndrome (GBS) sometimes Landry's paralysis orGuillain–Barré-Strohl syndrome, is an acute polyneuropathy, a disorder affecting the peripheral nervous system. Ascending paralysis, weakness beginning in the feet and hands and migrating towards the trunk, is the most typical symptom, and some subtypes cause change in sensation or pain as well as dysfunction of the autonomic nervous system. It can cause life-threatening complications, in particular if the breathing muscles are affected or if there is autonomic nervous system involvement. The disease is usually triggered by an infection.
The diagnosis is usually made by nerve conduction studies and with studies of the cerebrospinal fluid. With prompt treatment byintravenous immunoglobulins or plasmapheresis, together with supportive care, the majority will recover completely.
Needless to say, reading this FREAKED ME OUT!!!!! Everything I was reading sounded like I needed to get to the hospital immediately, and here Jimmy was off in the Uintah's, and I was home with a sick child. I called my friend Kim, and sobbed to her, explaining that I was maybe on my way to being temporarily paralyzed, and that I needed to get to the doctor. I made arrangements to have Rebekah go to the my neighbor Mandy's house (who brought scrumptious over-the-top dinner tonight!)h, and Kim took me to the Dr. I was so convinced that I would being admitted to the hospital that I took my overnight case to leave in Kim's car. When I told the Dr. the situation and my symptoms, it completely surprised me when he said that there wasn't much we could do. He said the treatment is expensive, and they wouldn't give it unless I got more severe. Kim asked if there were any tests they do, and again he paused. He said they could do a spinal tap, but then they wouldn't do anything unless it got more severe, so they would wait. This went against everything I had read. I was so surprised. I mentioned trying to address things early, and he said no, we should wait.
So here I sit, still freaked out. Unsure. Scared I'm going to be paralyzed for a while. Last night the numbness in my hands eased up a bit, so that made me really happy. But I feel more numb in my eyebrows.
I'll have to do another post on the emotions of having this happen to me. I feel so much let down for the whole "real food" community that even recommend raw milk. Yes, there are benefits of raw milk & I saw them. But is it worth the gamble of my life? my kids life? Risking permanent disability?
NOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Needless to say, reading this FREAKED ME OUT!!!!! Everything I was reading sounded like I needed to get to the hospital immediately, and here Jimmy was off in the Uintah's, and I was home with a sick child. I called my friend Kim, and sobbed to her, explaining that I was maybe on my way to being temporarily paralyzed, and that I needed to get to the doctor. I made arrangements to have Rebekah go to the my neighbor Mandy's house (who brought scrumptious over-the-top dinner tonight!)h, and Kim took me to the Dr. I was so convinced that I would being admitted to the hospital that I took my overnight case to leave in Kim's car. When I told the Dr. the situation and my symptoms, it completely surprised me when he said that there wasn't much we could do. He said the treatment is expensive, and they wouldn't give it unless I got more severe. Kim asked if there were any tests they do, and again he paused. He said they could do a spinal tap, but then they wouldn't do anything unless it got more severe, so they would wait. This went against everything I had read. I was so surprised. I mentioned trying to address things early, and he said no, we should wait.
So here I sit, still freaked out. Unsure. Scared I'm going to be paralyzed for a while. Last night the numbness in my hands eased up a bit, so that made me really happy. But I feel more numb in my eyebrows.
I'll have to do another post on the emotions of having this happen to me. I feel so much let down for the whole "real food" community that even recommend raw milk. Yes, there are benefits of raw milk & I saw them. But is it worth the gamble of my life? my kids life? Risking permanent disability?
NOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Monday, April 16, 2012
Gluten/Processed Food-Free on Vacation?! How?
Last week was great. We packed up the fam and went to the happiest place on earth, DiSnEyLaNd!
It was great, and lots of fun, but more difficult than I expected to eat the right way. I prepared by having my friend Cindy cook up a bunch of good quality snacks for me. She made a bunch of grain-free treats for me to take: cowboy cookies, a honey/molasses carmel corn that tastes like cracker jacks, two types of pumpkin muffins, a cranberry/dark chocolate bar. I took fruit I could snack on, and water.
This worked out pretty well on the trip down, plus while we were in the condo. But there was a lot of eating out, and that was tricky. We ate at three different buffets, which was enough to last me for a year! I've always hated watching people go crazy eating a bunch of unhealthy food, and now it's even worse. I was usually okay if I stuck with the salad bar, but that got old. At Disneyland I was able to get gluten-free buns, which was good, but usually gluten free bread has a lot of sugar in it. I found it interesting that In-N-Out Burger had a grain-free option for a hamburger where they wrapped the burger in lettuce.
I know that I ate things here and there that I reacted to, because I started to itch all over, and still am. My gut is sore, too, like I shocked it. I did sneak a few bites of no-no's here & there. I had a few skittles, a few licks of a lolly pop, and even had some cheesecake at a buffet! I didn't eat the graham crust, so I thought it would be okay. Nope. My family has made great strides in the last 3-5 months, but this vacation was a big step back, nutritionally. Live & learn. I guess I'll just have to pack all of my food to everything, all the time. It's so inconvenient, but I'm still searching for the answer! There's got to be a way.
It was great, and lots of fun, but more difficult than I expected to eat the right way. I prepared by having my friend Cindy cook up a bunch of good quality snacks for me. She made a bunch of grain-free treats for me to take: cowboy cookies, a honey/molasses carmel corn that tastes like cracker jacks, two types of pumpkin muffins, a cranberry/dark chocolate bar. I took fruit I could snack on, and water.
This worked out pretty well on the trip down, plus while we were in the condo. But there was a lot of eating out, and that was tricky. We ate at three different buffets, which was enough to last me for a year! I've always hated watching people go crazy eating a bunch of unhealthy food, and now it's even worse. I was usually okay if I stuck with the salad bar, but that got old. At Disneyland I was able to get gluten-free buns, which was good, but usually gluten free bread has a lot of sugar in it. I found it interesting that In-N-Out Burger had a grain-free option for a hamburger where they wrapped the burger in lettuce.
I know that I ate things here and there that I reacted to, because I started to itch all over, and still am. My gut is sore, too, like I shocked it. I did sneak a few bites of no-no's here & there. I had a few skittles, a few licks of a lolly pop, and even had some cheesecake at a buffet! I didn't eat the graham crust, so I thought it would be okay. Nope. My family has made great strides in the last 3-5 months, but this vacation was a big step back, nutritionally. Live & learn. I guess I'll just have to pack all of my food to everything, all the time. It's so inconvenient, but I'm still searching for the answer! There's got to be a way.
Wednesday, April 4, 2012
Sugar is Toxic- on 60-Minutes!
I received a text from one of my friends on Saturday and she said "I saw that Dr. Lustig was going to be on 60-minutes". I had no idea what she was talking about & didn't answer her. I thought maybe she sent the text to the wrong person. When I saw her on Monday she mentioned it again, and I was embarrassed to say that I didn't know what she was talking about. She's like "You know, THE Dr. Lustig! Sugar-free?" And it hit me!
A month or so ago I came across the BEST YouTube clip! It was an hour & a half lecture given by Dr. Lustig, a UCSF (University of California San Francisco) pediatric endocrinologist, about how sugar is toxic. I told my friend about it, because she is a dietitian, and I wanted her thoughts on it.
I couldn't wait to see how the topic was presented on 60-minutes, so I looked it up online. It is somewhat short, at 14 minutes long, and it is very well done! Yea! The word is being spread. I know people don't want to hear it, but it's important & really needs to be addressed.
Watch "Is Sugar Toxic" on 60-minutes
I was excited to talk about it with my dietitian friend. She agrees with it all. I'm going to show it to my kids!
A month or so ago I came across the BEST YouTube clip! It was an hour & a half lecture given by Dr. Lustig, a UCSF (University of California San Francisco) pediatric endocrinologist, about how sugar is toxic. I told my friend about it, because she is a dietitian, and I wanted her thoughts on it.
I couldn't wait to see how the topic was presented on 60-minutes, so I looked it up online. It is somewhat short, at 14 minutes long, and it is very well done! Yea! The word is being spread. I know people don't want to hear it, but it's important & really needs to be addressed.
Watch "Is Sugar Toxic" on 60-minutes
I was excited to talk about it with my dietitian friend. She agrees with it all. I'm going to show it to my kids!
Monday, March 26, 2012
Exciting News
I AM SO HAPPY! I'm starting to see the effects of healthy, whole foods eating on my kids. They haven't completely bought into the whole thing and they'll still have treats here & there, but if we don't have crappy food here, they can't eat it, and it's making a difference.
The first thing is, my 15-yr old son has lost 15 pounds since November. I'm thrilled. He had a check-up with our pediatrition then, and he was very blunt in telling him he needed to stop gaining weight (he was over 200 pounds). I have never made an issue about his weight and don't believe in "diets", but our lifestyle change with eating is working! Ha ha ha. Diets? Who needs diets? Ya-hoo! Can you tell I'm more than happy?
Tonight was another exciting discovery. My kids' tastes are changing! We had birthday cake & ice cream for my 2nd youngest's birthday, and most of them couldn't finish the cake. THEY SAID IT WAS TOO SWEET! That is seriously unheard of in this home! That makes me so happy. Eventually we'll phase into healthier sweets for b-days. It feels cruel to not give them cake & ice cream... eventually they'll get used to my sweets, I'll find a great grain-free cake they'll like, & we'll transition to my way).
Last year five out of the seven of us were overweight... now I'm at a healthy weight (along w/my two youngest), my husband has lost 25 and counting, and my kids are on the right track. I'm hopeful that our whole family can be at healthy weights over time. I don't necessarily want my kids to lose weight... at the least I'd be happy if they can maintain their weight as they continue to grow, and then they'll grow into a healthy weight.
The first thing is, my 15-yr old son has lost 15 pounds since November. I'm thrilled. He had a check-up with our pediatrition then, and he was very blunt in telling him he needed to stop gaining weight (he was over 200 pounds). I have never made an issue about his weight and don't believe in "diets", but our lifestyle change with eating is working! Ha ha ha. Diets? Who needs diets? Ya-hoo! Can you tell I'm more than happy?
Tonight was another exciting discovery. My kids' tastes are changing! We had birthday cake & ice cream for my 2nd youngest's birthday, and most of them couldn't finish the cake. THEY SAID IT WAS TOO SWEET! That is seriously unheard of in this home! That makes me so happy. Eventually we'll phase into healthier sweets for b-days. It feels cruel to not give them cake & ice cream... eventually they'll get used to my sweets, I'll find a great grain-free cake they'll like, & we'll transition to my way).
Last year five out of the seven of us were overweight... now I'm at a healthy weight (along w/my two youngest), my husband has lost 25 and counting, and my kids are on the right track. I'm hopeful that our whole family can be at healthy weights over time. I don't necessarily want my kids to lose weight... at the least I'd be happy if they can maintain their weight as they continue to grow, and then they'll grow into a healthy weight.
Subscribe to:
Posts (Atom)