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!

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.

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.

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: 

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!