Monthly Archives: November 2012

Oh, It’s Nothing…

This new brand of GLUTEN-FREE baked good showed up at few weeks ago. We made the chocolate cookies and they were a hit! Everything they offered was GF and DF except the corn bread. Enjoy!

or maybe it’s something … or nothing.

Well… I mean… I know it’s SOMETHING, but will we find out what that ELSE that SOMETHING IS –  before this year ends???

Dr. E’s nurse called, the day before Thanksgiving.

Just like she said she would.

As she began reading off the lack of information the latest batch of blood results showed, she got to my ANA test, and explained how my levels were elevated…

and how that can be something…

or nothing.

Huh?

{You have to love these blood test results that seem to shape the future tests, and these steps that MAY or MAY NOT end up affecting everyday of the rest of our lives.}  Right?

Similar to celiac, these blood tests can be helpful – or worthless… and it’s certainly isn’t foolproof.

One false negative or positive, and lead you in a different direction – missing the problem altogether.  Fabulous.

We finished up the phone call, after she said we were waiting on a few other tests – that might point us towards lupus or sjorgrens…  I think what she thought would be a stressful call of letting me know carefully (as to not upset me), left me with hope that we might eventually have answers – and I am in NO WAY depressed from that.

Obviously I’ve already embraced that SOMETHING is clearly wrong…  and I just want to know what that is.

I’ve done well NOT to jump to conclusions, but only learn about the certain auto immune diseases (out of the 80 that exist) that matched my symptoms.  The Dr. has suggested what her suspicions reside with – I want to know a little bit about what this all could mean.  Naturally, we have curiosity – and I just want to be on a road that isn’t continuing to crumble.

First of all, values of an ANA test – aren’t really a quantitative answer in blood testing.  A higher number doesn’t indicate “worse” vs. a lower number meaning “better” or fewer symptoms.  Basically, it means more of a positive or negative… and a reason to dig deeper.  The nurse said – it doesn’t always mean auto immune disease… but it’s good indicator of.

What I read later was… if you had no other symptoms of lupus or sjorgrens or others, then a positive doesn’t mean much as far as having active auto immune disease.  However, if you’re having symptoms that line-up with the test – then the test means a bit more… {again, to point you into further testing.}

Personally, Sjogrens makes the most sense to me – as far as what goes with celiac, and what lines up my symptoms that revolve around my head/neck/eyes/lymph nodes – as well as fatigue, and breathing issues.  While I knew what it was in the back of my mind, I didn’t REALLY know much about it.

Then I watched this.

While I realize it could very well NOT be this either – because often times AI issues over lap with one another, and I realize they want to know what they’re dealing with exactly to best treat you, and monitor you…  and I appreciate that…

It’s just – there is something of comfort to listen to someone else who feels similarly and who “gets” it – and NOT feel so alone in your lack of energy, drive, motivation and capability.  If some top athlete can get struck down with this, and a year later – by God’s grace – revamp her life and health to be an Olympic champion and rock star the following year…

I can be well again, too.

God gives me hope.

Hope for answers, and health – and NOT feeling like cement, who doesn’t care… who hurts all the time… and who is always tired, chronically thirsty and over-all sick.

And you know I’ll do whatever in my power to get there.  By God’s grace, and will – I will be well again.  I look forward to that.

So… I wait!  I’m getting good at that.

If you are struggling with getting answers on why you are sick, and suspect it might be auto immune related, here are some TIPS on how to get the help you need.

“What do workers gain from their toil?  

I have seen the burden God has laid on the human race.  

He has made everything beautiful in its time.  

He has also set eternity in the human heart;

yet no one can fathom what God has done from beginning to end.

 I know that there is nothing better for people than to be happy

and to do good while they live. 

That each of them may eat and drink, 

and find satisfaction in all their toil—this is the gift of God.”

Ecclesiastes 3:9-13

I Will Survive!

Gluten-free/Dairy-free pumpkin pie right before it entered the oven. These ended up being VERY good. Thank you Gluten-free Mama!  See recipe links at the bottom of my blog.

Every trouble in my life, or when you’re a dramatic teenager, “love life”…. was healed or comforted through music.  God definitely created a blessing in songs.

So it only seems appropriate to share how I’m doing with a song…

I made it, and I’ve learned a few things this week:

I CAN make all of the Thanksgiving food myself, with a few “little people” helpers.  Thankful for my kids.

What a spread! God is good! We definitely didn’t go hungry!

Making that much food, required me to be on my feet for 18 hours.  Ouch.

Being on my feet for 18 hours made my legs swell until my jeans wouldn’t fit, don’t cook in yoga pants next time.  Normally people’s pants don’t fit after they actually EAT some food.  Not always.

If you have an auto immune disease, it could take several days to recover.  Prepare to sleep or walk around in a zombie-like state, for the next 3 days.  Even if you don’t prepare to sleep, you’ll be doing so anyway – so write it in pen on your calendar, and bank on black Friday shopping from home.

October Baby is an awesome movie/message – and a great cleansing movie, if you’re needing to cry.  If you’re not needing to cry, you’ll probably cry anyway.  Something about sincere young love – gets me every time… so does God’s love.  Simply beautiful.

“Though He causes grief, yet He will show compassion.”

Lamentations 3:32

GF/DF pumpkin pie – delish!

Chocolate Pumpkin Pie

Two Steps Forward, One Back

 

High five! In my flare this weekend, my ulnar nerve started acting up. This nerve splits down your ring finger, and affects your ring and pinky fingers… (see the line?) They are both numb – and this is probably due to inflammation. I had this after one of my births and it lasted for 4-6 months last time. Thankfully it’s my left hand… much better than uveitis! Count ALL of your blessings each day!

Being healthy is like a sport… sometimes you have great games, and other times…

You feel like K-State falling from number 1, to number 6 in the nation.

Ouch.

It’s times, such as these – I remind myself that not giving up is the most important thing.

Sure, we all have bad days, sometimes bad seasons… {for me, I’d be fine with scratching out this whole year.  REALLY.  But God had other plans… and there is no doubt in my mind the adversary has been at work trying to break me down.  He wants to know just how much I can take.  Apparently he has disregarded how BIG my God is.}

But do we stop liking the sport suddenly, after a bad season?

No.

We may change our strategy, or adjust things to our new-found challenges we’ve been given.

But again – NEVER GIVING UP!

God didn’t make worthless stuff.  He made beautiful, special, important things… with a purpose.

As we approach what is ONE of the most difficult times of years for people who struggles against over eating, {when we make meals with enough food for 3 days, how does THAT not happen?}… let us focus on NOT giving up.

STAY ON THAT WAGON!!

But.

If you should slip off.

Acknowledge the mistake.

AND.

GET. BACK. ON.

Having Faith…is half the battle in most struggles.

Do not lose heart.

FOOD doesn’t own you, and neither does sickness.  GOD DOES.

“And he told them a parable to the effect that they ought always to pray and not lose heart. 

He said, ‘In a certain city there was a judge who neither feared God nor respected man. 

And there was a widow in that city who kept coming to him and saying,

‘Give me justice against my adversary.’ 

For a while he refused, but afterward he said to himself,

‘Though I neither fear God nor respect man, yet because this widow keeps bothering me,

I will give her justice, so that she will not beat me down by her continual coming.’

And the Lord said, ‘Hear what the unrighteous judge says. 

And will not God give justice to his elect, who cry to him day and night?

Will he delay long over them? I tell you, he will give justice to them speedily.

Nevertheless, when the Son of Man comes, will he find faith on earth?'”

Luke 18:1-8

 

What Your BURN Worth?

My POLAR watch helps me keep track of my HR throughout my workouts! This piece, paired with a band that goes around your chest – tracks your HR while you’re in motion!

Ever try to Google what a workout is worth in calories burned?  Early on, I did this often… I wanted to know just how many calories I was getting rid off for the time put in!

I type in …”30 Day Shred, how many calories burned.”

I realized quickly that the numbers were inconsistent because the variables change.  I wanted to believe it was 300-350 for level 3… but could that be possible?

Well actually…

Based on your height and weight, and your activity level – there are estimates, but they can’t really tell you for sure…  and I really wanted to know “for sure, for sure”…

So, for a year I’ve considered some type of HR monitor, that was able to calculate calories burned… but also percentage FAT calories burned…  but with most things, it’s hard to know which one, and why, etc.  I just simply didn’t have a whole lot of time to research it.  (Seems I’ve had OTHER things stealing my time… Ahem)

In an effort to spice up my workouts a few months ago, I also purchased “TURBO FIRE”… it’s a program by Beachbody (which this body is NOT beach worthy, those days are LONG gone… but that’s beside the point!)

 A new challenge sounded fun… and I wanted to try it.  I figured it could be fun and I could mess up the moves in the privacy of my own home.  I had friends that had tried it, and really liked it – but they encouraged me to get a HR monitor also – so I could compete with myself on calorie burns, etc.  on the workouts.

I was in the for the challenge and ordered my set!

Honestly, I thought – “Come on, I’ve been doing Bob for a few years… surely I can handle this little blonde, jumping, mouth piece.  How hard can it really be?”

Well, unfortunately for me, that prideful attitude didn’t realize my body was going to be stepping down another few notches… and the workout became VERY difficult for me.  IT wasn’t because the workout is more  difficult… but because my health was worsening, and I really was noticing.

I was no longer able to constantly move for 30-40 minutes without breaks.  I was struggling to breath, and keep up.  I dreaded working out, even more…  so I took a little break from TURBOFIRE for a bit, and recollected my thoughts.

I originally planned to deviate from the program SOME, and do what I wanted to – in-between my other cross fit type workouts.  I felt badly I was unable to complete (without slowing down, taking breaks or stopping) MOST of the workouts because they’re so cardio based, which was suddenly my weakness.  I actually felt better when I just did 20-30 minutes of Bob, but I missed my cardio too … I didn’t want to give up on keeping my body moving.

I needed encouragement, and my NEW Polar Watch does just that!!

Here are my totals after a 45 minute TURBO FIRE workout. I definitely burn more calories with Bob, but it’s good to get in some HIIT cardio too!

I liked seeing that although I burned over 400 calories with a 45 work out – it was only 9% fat calories…. versus when I burned 250 calories with Bob, it was almost 40% fat calories!!  That’s quite a difference, based on the type of workout – and it’s good to know.

I no longer feel so badly about not doing tons of cardio right now… not to mention it’s just plain hard for me to carry out on a daily basis, with the intensity I once had.  I do it when I can, and the other days I’m happy burning some fat at a faster rate with TEAM BOB.

I highly recommend this type of watch if you can splurge and get one.  They start around $100  (Christmas is just around the corner)  It’s been a fun motivator, and a good reality check on where my workouts are…

I love that it shows me my target rates and goals each week. It tells me where I’m needing to push more or keep my HR in a little different range. So far I’ve mastered 1 and 3 – but struggle with in the middle. Huge surprise for an extremist!

Do I feel like working out?  Actually – most of the time… I don’t.  Most of us probably don’t…. but I did really used to LOOK FORWARD to working out, if nothing else – for stress relief.  I rarely feel that way anymore.

It’s really hard… and I’d like to curl up into a ball.  But God is reminding me that something is better than nothing, and just to do what I can.  I have still been fitting in 4-5 workouts a week most weeks, so I’m grateful for that.  They are probably HALF of the intensity of last year, if that…  SO while that’s a little frustrating, I feel confident I will get my strength/endurance and energy back to some degree – and I’ll be welcoming it with open arms.

Peace out!

 “And I will do whatever you ask in my name, so that the Son may bring glory to the Father.”

John 14:13

**If I may, ask for specific prayers this week…  In the coming 5 business days my slide will finally be reviewed at the University of Chicago.  Please pray with me, intentionally, that the pathologist will clearly see the celiac damage – so that part of this journey can be put to bed, as we wade through this next part for more answers.  I know I don’t need that piece of paper to tell me what I already know – but for the sake of it helping others avoid the mistakes that were made to my case…  I’d like doctors to know… THIS is one of the major reasons why it’s being under diagnosed.

Stuffed With Stuffing…

I read that these chips were one of the TOP TEN gluten-free favorites for consumers…. so I had to get some for the family to try out. My husband said they’re perfect – the after-taste is refried beans… So if you like that flavor – these are worth a try!!

I used to love stuffing.

What’s not to love?

Bread – Good.

Butter – Good.

Spices – Good.

Yes, there are other ingredients in the traditional Thanksgiving dish..  but the holiday wouldn’t be the same (for me) without it…  so I knew I had to get to work… because the 99 cent box of Stove Top, wasn’t an option this year.

I’ve been on the hunt for the recipe that looked the most like the one I might enjoy.  I ended up with a dish off of glutenfreecookingschool.com… with a few modifications.

I started with a whole loaf of UDI’s GF bread… and cut the entire thing into 1/2 inch pieces – and toasted those pieces in the oven at 400 degrees for 10 minutes, turning every 2-3 minutes.  IT was actually REALLY easy, but I’m sure with anything it can be easy to ruin too…. by not toasting the bread enough or putting too much broth in too quickly.

GLUTEN FREE / CASEIN FREE BREAD STUFFING

– 1 loaf of UDI’s bread cut into 1/2 inch squares and toasted at 400 degrees for 10 minutes

– 4-8 TBSP butter (earth balance, or smart balance)

2. c. Chopped Onions

1 c. chopped celery

1 cup fresh mushrooms

1/4 – 1/2 c. minced parsley

1 tsp. sage

1 tsp. thyme

3/4 salt

1/2 tsp. black pepper

1 cup – 1 1/2 cup chicken stock

Pour toasted bread into large bowl, melt the butter over medium high heat.  Add the onions, celery and mushrooms and cook for 5 minutes.   Stir in the parsley and spices and in toasted bread and toss until well combined.

Stir in stock until the stuffing is lightly moist, and turn to low to soak in for 3 minutes.  Stir again, and check consistency.

Voila! 🙂  YUM!  It was 10 thumbs up at this house and really painless over all… and now we KNOW what is in the stuffing we’re eating!  Here’s to being healthy for HIM!

“May the Lord smile on you.” 

Numbers 6:25

Here We Go Again…

Lovely flowers from an encouraging friend to help brighten my weekend. Praise God for my sisters in Christ!

I won’t assume you were sitting on the edge of your seat, but if you were… please forgive me.

It’s been a rough week.

After a super encouraging two weeks ago, this past week…

left a lot to be desired.

While most people had lots of emotions about the election…

I’ve had my own personal-upset going on and frustration continued.

Tuesday I visited with the eye specialist, who seemed to think my uveitis might be slceritis instead.  Not that huge of a difference, other than what we’re looking for with auto immune disease.

He was VERY nice, but highly distracted, and didn’t listen to me much until almost the end of the 2 hour appointment.  After the entering of records that took forever, and a 10 page questionaire I had to complete… like he was literally INSIDE my eye-ball with as many devices he could test me with.

No, seriously.  It felt like it.

Short of REMOVING the eyeball itself, I felt we had a very in-depth investigation… with light brighter than the sun that was blinding, if was indeed – not already, blind.

Since the specialist was tied with the office of my encouraging endocrinologist, Dr. E… he was able to pull up my files from last week.  Unfortunately none of them contained any information regarding blood work of my chest x-ray from last week.  He requested to see me again, after I had results back…

His first opening?

Was Dec. 19th…

Provided I didn’t have another flare up with “whatever” is going on in my eye…  then I was to call him right away…

Dec. 19th.  Well over another month away…

I still had hope that Dr. E would be calling with more information, so I wouldn’t have to wait another month with no direction.

On the way home from my appointment, I tried to discern the differences between the two eye inflammations.  I was certain it was  uveitis I had… but Thursday I would talk to my local eye Dr, and I knew he would have some insight into what HE actually saw going on… to be able to report to the specialist.

Wednesday I finally received a call from Dr. E’s office.

It wasn’t the call I was hoping for.

It was her nurse… She called to share my reports with me… that nothing signficant stood out with vitamin deficiencies… (praise!  Verified that I am eating well, and apparently now absorbing vitamins) and that my chest X-ray didn’t appear to show signs of sarcoidosis, but we’d need to talk/test further…

RIGHT AFTER I meet with the eye Dr. again…

*Excuse me?*

While I tried to make sense of things with her nurse, my heart was ripping into two.

I’m not even sure the rest of the conversation… other than she was going to have the Dr. call me, and review with her what I had done so far…  and never gave me a time frame.

When I hung up the phone my head fell into my hands and I wailed… until my chest hurt and I couldn’t cry any more.

I couldn’t even believe this.

I had been so exhausted every morning this week – most days were becoming a challenge to even get through daylight hours, and now this?

“God, I can barely function…  I need you,” I cried.  “Please, TELL me what to do.”

He led me to email Dr. E.  I prayed over the words I sent – not with anger, but with purpose.  I needed help.  I wanted HER help – and I couldn’t wait until mid-December.

It was a long day of feeling sorry for myself.  I knew that untreated celiac leads to a host of auto immune issues, but chronic inflammation due to your body attacking itself leads to cancer….  I prayed for peace, and rest – and energy to get my work for the week completed.

I had my closest friends praying, for a miracle… and I felt like one came that night.

Dr. E wrote me back.

From vacation!!?!??!

Yes.  She. Did.

She explained she was having her nurse call and would be calling me Monday to discuss things.  She was kind and caring… and everything I loved about her…  and I was *so* grateful.

In the mean time I’ve gone back to searching the chance of it not being sarcoidosis, further tests, other symptoms I’ve had, etc – trying to remember it is probably several auto immune diseases over lapping – and that is why this is not some “24 piece puzzle”… but rather a 5,000 piece design of the ocean with a missing piece that will never be found.

So there you have it.  My weekly update on lack of answers … and a continued worsening feeling.

The eye Dr. asked me when I started noticing I felt sick… and I honestly don’t remember a specific time/date.  I know a year ago April was the stomach issues kicking back in, and then in January when the gluten issues ramped up – so I was losing weight, and sick most of the time. In April I had no energy to do the children’s clothing sale I so desperately needed to do – as children’s clothing seems to over-take our home each season…  and by May I was physically and emotionally exhausted and didn’t even feel like going on vacation – but I know I’ve continued pushing through since then…

Let me rephrase that.

God has filled me up – and kept me going … on His strength…  I suppose that’s how He designed me to survive this challenge.

As a rule, I haven’t been overly sad about things, nor depressed – but I have felt very defensive when people want to know what I’m not better, and I don’t have an answer.  Not because I want to know for them, but for our family.  I know that celiac is probably the tip of the iceberg, and undetected celiac leads to many other auto immune diseases – so we could be searching for multiple issues…  and I’m honestly FINE with that.  I just want to know.  You know?

As I study other auto immune diseases, and symptoms – it helps me to narrow our search.  Many different things you have can cue a specialist in, on what you could have.  The eye Dr. took specific interest that I had chronic pink eye, sinusitis, dry mouth, yeast infections in college and lymph node issues for years…   Feet falling asleep, hands/feet that fall asleep often, muscle spasms, varicose veins, DVT (deep vein thrombosis), and low BP are other cues… that can help them know what to test.

As the eye Dr said – celiac is probably the cause of all of this.  While we know gluten can worsen many auto immune diseases, celiac is known for being one of MANY auto immune diseases that you have issues with.

Fabulous!!

But I truly am thankful to have people who do want to help!!

I’m also thankful for the people God has put into my life to encourage me – you all know who you are.  Someone recently wrote me about the fatigue of auto immune disease…   and it almost made me cry.  Just to know someone else “got that.”

It’s truly something you can’t explain – it’s awful.  Insanely awful – and SO frustrating.  No amount of sleep fixes it, no naps, no resting… nothing.  It can hit out of no where… most often when you’re REALLY needing energy.

I’ll tell you what.  This teaches me a lot of empathy…   for those suffering from diseases which they also have no control over, that we can’t see….  they’re not trying to complain when their bodies hurt, they don’t mean to be anti-social when they can’t eat your food.  They’re not faking it on some days… They’re truly ill.  Be an encourager and pray for them, it will do wonders for their spirit.

“Then He said to His disciples, ‘The harvest is plentiful but the workers are few.  Ask the Lord of the harvest, therefore, to send out workers into the harvest field.”

Matthew 9:37-38

The Professional Patient

What a novel idea. The doctor was facing me, and going over everything – right. on. the. screen.

That’s what I feel like.

Each month, the tally on how many doctors I’ve been to – seems to rise.

I can hardly believe we are in the last quarter of the year. In less than 2 months, we’ll be ringing in a new year… and I still am struggling to be heathy for Him on a daily basis.

For me, 2012 means… a year of searching why my body was breaking down, and then…after repeated mistakes, and lack of listening… me, realizing that gluten was my number one problem… and coming to terms with that, for myself… and genetically – for our family.

But while things greatly improved in regards to bloating and gut pain… there were more symptoms, and issues that came on – especially if I was accidentally glutenated, as I was in August, and again in September…

I’ve been told I must be “super” sensitive to gluten… because my reactions have been insane with trace amounts.

I’ve embraced the possibility of having asthma, and multiple food allergies… only to discover last week. I have neither.

“Then, what is it?” I wondered… “What could else is going on?”

Why am I so tired, all of the time.

Why do I hurt, and swell?

Why can’t I sleep at night, and why do I wake up with night sweats if (according to blood work) I’m not in menopause?

If my thyroid is fine, and my adrenals are ok… and my cbc says I don’t have cancer… what is going on?

Because I KNOW this is not in my head.

I knew I struggled with breathing, and it’s been getting worse and worse. I’m no longer able to workout more than 15 minutes without having to bring my breathing and heart rate back down, before starting again… and sometimes it’s so draining, and disappointing to this type A girl.

And then…

I met my endocrinologist, Dr. E.

I experienced something I’ve yet to experience.

She listened and understood.

She was the first Dr. to actually want to look over and review the sheet of things I typed up to go over with her. It included most of my past year. Tests I had, lab work and symptoms…. everything up to ‘now’…

Interested, she asked if she could have a copy… in disbelief, I excitedly said…”Of course!”

“We’ll get to the bottom of this,” she reassured me.

I sighed a breath of relief thinking, she might actually know what she’s doing.

She didn’t hesitate writing celiac on my paperwork. She got it…. and after about 10 minutes, she returned with her plan of action.

WOW.

She has a plan and I didn’t have to defend myself of where I am with everything?

For me?

I was in shock.

“All of your symptoms, with celiac and uveitis… point to sarcoidosis,” Dr. E said.

I nodded, and listened…

“I need you to have a chest x-ray, blood work to check for some genetic markers, vitamin deficiencies and a bone scan. I also want you to see a uveitis specialist and I’d like to try a NON-addictive sleep-aid,” she said.

“OK…” I listened.

Sarcoidosis??

That sounded familiar. Maybe?

Ironically, {to me} I had first heard of it only a few weeks prior, as a friend of mine, has a friend struggling with a rare form of Sarcoidosis…as well as other auto immune diseases.

Seriously God? YOU know how to make sure I know YOU ARE watching over me!

Yes. He does.

I. AM NOT. ALONE.

So, 3 hours later, after I went down my laundry list of tests that day… I was excited.

So grateful.

I needed to learn about what having Sarcoidosis could even mean.

Is Sarcoidosis bad? How bad? Does it really match my symptoms?

So that’s what I’ve been doing… as I await my results.

I’ve been unearthing information about this strange named disease… and figuring out how to say it.

…and have been shocked at how much it would explain much of the unexplainable “whys” of my body for years.

Sarcoidosis, lovingly called “SARC” by many… is a systemic, chronic inflammation, with a genetic marker, and an environmental trigger, believed to be breathed in, or ingested. IT causes a hyper-immune response, which makes white blood cells form clusters, called grandulomas. These often cause permanent damage in many of your vital organs. The number one place it settles – is in your lungs, (sometimes) causing irreversible damage. It can settle in all of the major organs, including your heart, liver, kidneys and eyes, causing things like uveitis. It would explain my breast fibriods as well… why they were not drainable – but large, white masses of cells.

It’s common for people with undetected celiac to have sarcoidosis, as I’ve read some statistics up to 40% of celiac females having some type of sarc… and it’s also regional – with certain states seeing a lot more sarc. than others… including Iowa, Kansas, Michigan, some of the east and western coast states. It made us wonder if allergens and humidity played a role, with the genetics aspect.

There are good scenerios, and tragic ones too… depending on how long you’ve had it, and the extent of the damage – which is staged, according to your chest x-rays.

Since I’m not sure if I have it … I’ve tried to not let my mind go anywhere, but to the possibility of this could be the start of feeling better…

So I pray… as I await my results… and I welcome prayers and joyful thoughts that will keep me positive and smiling.

I don’t need solutions – just listeners, encouragement and love.

“See to it that no one takes you captive by philosophy and empty deceit,

according to human tradition,

according to the elemental spirits of the world,

and not according to Christ.”

Colossians 2:8

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