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Missing Things

My husband was missing his "Starbucks" Frapps that he used to get.  About a week in from giving them up for 90 days, he realized just how awful they had made him feel - but he was addicted and didn't know it!  He says - never again, it's not worth it.  Now instead, I can make him a mock-frapp with this "dandy" - which is GF and "like" coffee without the bad aspects.  I can use homemade coconut milk or almond milk and some organic chocolate, a banana and ice - and voila!  Much better for him than the excitotoxin  frapps from Starbucks!  He's not missing them any more...

My husband was missing his “Starbucks” frapps that he used to get. About a week in from giving them up for 90 days, he realized just how awful they had made him feel – but he was addicted and didn’t know it! He says – never again, it’s not worth it. Now instead, I can make him a mock-frapp with this “dandy” – which is GF and “like” coffee without the bad aspects. I can use homemade coconut milk or almond milk and some organic chocolate, a banana and ice – and voila! Much better for him than the excitotoxin frapps from Starbucks! He’s not missing them any more…

Counting 1000 gifts is no small task!  I’ve chosen to break it down into bite sized pieces…  just 10 a day.  (Here is why)

So, at the end of the day… I take a moment and recall 10 things that stood out from my day… that I’m grateful for, the blessings.

They can be big or small, simple or complex… but 10 things on my heart.

I’m over a hundred things I’m grateful for, and enjoying the counting process…  it slows me down, but gives me more time… it lightens my heart, and gives me perspective.  It brings me peace.  contentment.  joy.

What things matter in my life?

What things do I count… ALL joy?

What do I truly value?

Someone told me this week, “I was telling my husband about how you can only have 12 foods or something…”

“Twelve foods?” I thought.

That really isn’t true.  I suppose any more I don’t really “miss” most foods I can’t have – I don’t really think of myself as deprived… it’s just a given, this it what it takes to keep me well.

This is what it’s going to take, and I don’t know how long it’s going to take…

Each day is a gift, I count all joy.  A gift from God who led me to understand the “what” of why I was sick… and a way to be well.

But more than me ever missing food, I sometimes grieve things I’ve noticed are “missing” since getting sick.  Some of them left quickly, others gradually … faded away.   Unknowingly changing and then, just seemingly – Gone.

Some I might have assumed were just from “mommy brain” over the years my memory slipping a bit… or others I’ve just assumed I was out of practice on this or that…  but now, knowing what I know… 

That’s not the truth.

Saturday a friend and I were talking.  She asked me the names of the players on my child’s soccer team.  One… and then another… and then another.  I stumbled, stammered, and for the life of me… could NOT remember their names.  Not a one.  Even though I KNOW that I knew them.

Things like this happen frequently to me.

It’s not like an, “Oh I can’t remember this second…” type of things… these are things I totally know – but I just simply can’t recall – even the slightest bit of information and it never comes to me on my own.

It’s embarrassing… and frustrating.  Would it be sad to say I’m starting to get used to it?  If my husband is with me, he helps me – which is nice.  It breaks the silence of, “I’m sorry, there is a blank where that information should be!”

I’m not sure when it will come back… if it does… ever.

Another thing is my penmanship.  It was getting worse over the years.  I was assuming it was lack of practice?

Looking through some old letters this summer I was in awe at my lovely writing and neat letters from college, even 10 years ago.  Slowly it’s deteriorated…

Some days it just hurts to even hold a pen – but I do it and those days, it’s REALLY bad.  On a good day, I remember how I used to make it work – but on a bad day I’m simply embarrassed that “THIS” is my writing.

Sloppy.  Difficult to read.

Lastly, one of the things I miss is ability to recall Scripture the way I used to.  It’s been something I’ve been relearning and working on this year, but again – I’m unsure if I will get that memory and those skill back.  Earlier this summer a friend called and wanted to read a letter to me.  It was one I had written to her, encouraging her during a time of trouble.

I literally broke into tears.

“I wrote that?”  I asked.  I was simply in disbelief that I had the knowledge to encourage so powerfully from the Bible… and how deep my knowledge had been back then.  I was on fire.  More than anything, it made me realize just where I am now, comparatively.

It made me frustrated.  Wondering…  will I get that back?

All of these things, and more have been hindered from auto immune disease.  My body simply attacking itself from food or toxins in my system that it views as the enemy.  Any given trigger can start-up a reaction that can last for days to weeks to up to 3-6 months and many flares in my brain I will have no clue are occurring because there are no pain receptors there.

This is why “cheats” (or choices) or mistakes can be so devastating to my future health.

Does that mean I live in fear of what my future holds?

No way.  Not a chance.

Do I really count it all joy?  Even the things I’m missing?

I should. 

Maybe some day I won’t even know what I’m missing. 😉

I live in faith with an assurance that this has all happened for a reason, and that MY God isn’t going to leave me.  No.  In fact, He has prepared me for this walk that is my life, and He is drawing me closer to Himself through it.  Plus, He specifically tells me NOT to fear.  It gives me great peace to know I’m not alone, and not without a purpose.

Yes, on the days you would NEVER choose for yourself.  The really hard ones?  Trust God.  He is not shaken.

“God is our refuge and strength, an ever-present help in trouble. 

Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea,  

though its waters roar and foam and the mountains quake with their surging.

There is a river whose streams make glad the city of God, the holy place where the Most High dwells.”

Psalm 46:1-4

What Your Body Needs

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Flax seed is best in liquid form. I put a tsp. of this in my smoothies and enjoy an immunity boost from the Vitamin D as well. This is found in most refrigerator sections of your health food department.

Ever wonder what a coma feels like?

I used to.

I used to think it must be painstakingly awful to be trapped inside your body… screaming – and no one could hear you.

Maybe you could feel pain, but couldn’t tell anyone?

Simply. Awful.

I truly felt like 2012 was my coma of sorts. I believe my gut issues ramped up again before that, but my body completely dumped hormonally in January, and my nightmare of sorts started then. I went gluten-free in April, got a UTI for a month in June… Then as I was cross contaminated during the summer a few times, it just kept knocking me down another notch, and then another.

I couldn’t figure out what was happening, and what made it worse – is no medical doctors could tell me what was wrong either.

Clearly, something was wrong.

My own body had to be screaming… in a sense it was speaking to me – and using the only way it knew how to communicate.

Doctors told me fatigue was hard to diagnose. I tried to explain, this wasn’t fatigue. It was way worse.

Come on. I had 8 kids in 10 years. I know what sleeplessness feels like.

This was different.

It felt like a carb coma. Only 10x worse and all day long.

I mentioned how all disease starts in your gut from damage – that then leads into your bloodstream, and how that can throw off your cells, and do some really weird things depending on where that damage is in your gut. Mainly – you feel SICK – but WHY??

Well, one of the things “weird things” that can happen – is that leaking starts depleting your body of essential amino acids, and enzymes. Without those cells functioning correctly, your body suddenly unable to take the foods you eat, such as beta carotene in carrots, and turn it into a vitamin you need to function – like vitamin A. See how this snow ball effect can take off rolling?

When your body is unable to do those essential things… clearly – things are going to start going hay-wire – and you feel symptoms, which you may or may not treat or shrug off.

One of the two major enzymes I was low on was Coenzyme Q10 or CoQ10. This decreases with age naturally, but it’s essential for cell respiration (healthy, oxygenated cells), electron cell transfer (for your muscle movements to be smooth as you move, vs. tight and hurting), it’s also a strong antioxidant and also may inhibit certain enzymes involved in the formation of free radicals (oxidants) building up in your system. So without it, your body is going to hold onto toxins, and that build up will make you sicker.

CoQ10 is found in your mitochondria and it’s necessary for the production of ATP (quick and easy access to energy from your cells). Non-sick people needs 90mg/day, and sick people need about 300 mg/day. There are several disorders tied to the lack of this enzyme (congestive heart failure, cancer, Parkinson’s, periodontal disease, miscarriage, auto immune disease, etc) and it’s also tied to the loss of energy in “chronic fatigue” that goes along with all auto immune disease. Without CoQ10 availability, aging accelerates.

The other deficiency I had, which is tied to many people who are sick – is glutathione. It’s an important molecule that helps prevent damage to your cells by neutralizing the negative molecules generated during energy production. A fabulous antioxidant – but if you’re body isn’t producing it, it’s bad news. It processes medications and cancer-causing pounds known as carcinogens. It helps build DNA, proteins and other important cellular parts.

Normally it recycles itself – which is awesome, unless your toxin load is too great and then there is no way for your body to fight a chronic illness. If your body is attacking itself – and then it then can’t repair itself… you have some major problems. Most symptoms of a deficiency in glutathione include things like seizures, slowing down of physical reactions, movements and speech (brain fog anyone?), loss of coordination (ataxia), and recurrent bacterial infections (yep! that was me!)

Poor diet, pollution, toxins, medicines, STRESS, trauma, aging, infections and radiation ALL DEPLETE your glutathione. Most likely if you are sick – YOU ARE LOW on glutathione. (Definitely one to ask your doctor about) A glutathione deficiency is tied to chronic fatigue, heart disease, cancer, chronic infections, auto immune disease, diabetes, autism, Alzheimer’s, Parkinson’s, arthritis, asthma, kidney problems, liver disease… on and on. Do you get the picture? I’m on supplement for this, as well as selenium supplement (In my Thyroid Energy, as this helps the body recycle and product more glutathione), and Milk thistle herb (which also helps boost glutathione levels and helps your liver detox). Exercise also helps – one more reason to keep moving!!

So, that’s a little bit of what my body was trying to tell me … and a few things that I’m working on to heal and repair this damaged body of mine… and I can tell you that so far – combined, I’ve made HUGE strides that I never dreamed would be possible with how I felt in 2012. I know people go on like this for YEARS… and while I dealt with celiac for 20 some years… this was a whole new adventure that I’d love to help just ONE more person NOT experience. You can have an auto immune disease – but it doesn’t have to have you. To God be the glory – GREAT THINGS He has done!

“But God has helped me to this very day;

so I stand here and testify to small and great alike.”

Acts 26:22a

Systemic Pain?

My favorite organic green tea.  Look for organic tea that is less processed, and contains NO foreign additives! (in your health food aisle)

My favorite organic green tea. Look for organic tea that is less processed, and contains NO foreign additives! (in your health food aisle)

When I say systemic pain… I bet those of you with it – know exactly what I’m talking about.

People like my husband, who didn’t have pain like that… wondered just what type of pain I was having, and he wanted to understand it better.

“Is it similar to being chilled to the bone?” he asked.

“Not quite…,” I said.

I tried my best to explain, that it’s not always the same… but there are similar issues with it, and certain triggers make it worse – leaving me curled up in fetal position or asleep in bed.

The two I know (for sure) that worsen things – are sunlight and cold. But some days, I wake up thinking… “what in the world did I do or eat yesterday? or the day before?”

USUALLY, the systemic pain precedes a day or evening of inflammation – although the inflammation is in my joints, the pain radiates through my body – into my muscles and bones and brings along a friend – frontal lobe headaches.

I’m certain it’s different for everyone, as we are all designed differently but for me, it reminds me of the radiating pain you can feel in labor when you’re in transition, only it isn’t focused on your uterus and back only. Similarly, it drains your energy, and makes you feel like you’re going to throw up as the flare worsens. Often times it starts in my upper back and shoulders or behind my eyes… so I feel this sensation in my throat, as if I could throw up because I just hurt everywhere and I can’t function. There really hadn’t been anything “like this” for me before – except labor or perhaps a migraine, but it’s worse than that. In labor, you at least have a relatively slow term goal, and a GRAND prize at the end! Not so much, with auto immune disease… as most are told this must be treated with medicine as it continues to worsen for life…

Because this pain was combined with my fatigue from my hypothyroidism issues, it was difficult to separate what was going on. Add in the chronic gut inflammation – and things have been a tangled mess. No wonder each “specialist” couldn’t figure out what was going on… especially when I’m missing that all important, “biopsy confirmed celiac diagnosis.” (please)

Overall, with the change in my diet and supplements, I’ve not had “as much” of this all at once. However, I recently visited the chiropractor and got adjusted – which might have released some tension, and build up, causing some of the systemic inflammation to be released into my system. I’m on day 4 since my adjustment, and today was a much better day.

So what do I do for the pain? I try to avoid taking anything unless I’m really struggling… and after I’ve tried all of the usual helps. Warmth, quiet, green tea… and then I turn to 2 Aleve. Some days it helps – and some days it can’t touch it. Since my diet change, and added supplements these “bad days”, are MUCH fewer. I no longer feel like “this is my life” forever. Praise God.

I go to the naturopath to review all of my test results from December, and I’m SO excited! I can’t wait to see what more progress we can make. I even signed up for a vitamin IV!

I read some reports on vitamin IVs being a fad in Hollywood, and medical professionals tried to say that they weren’t beneficial, “Unless you had gut issues that didn’t allow your body to absorb vitamins, since they are best absorbed through you gut.” BINGO. With auto immune disease being on the rise – should we really be surprised this is gaining in popularity? Several studies have shown that IV treatment filled with vitamin C has benefited cancer patients GREATLY throughout treatment or for their treatment, depending on the stage of the cancer.

I can’t wait! Oh wait… I already said that. But really… I can’t!!!

Healing your gut might take some time – and obviously I’d never consume gluten or dairy again – but praise God for true healing of my body from the damage that has been done over the years – thanks to celiac disease. Holistic medicine is a huge blessing, and God made our bodies to HEAL.

“And my God shall supply all your needs according to His riches in glory by Christ Jesus… Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”

Philppians 4:19,6-7

That GUT Feeling…

Things that make you go hmmmm?

Things that make you go hmmmm?

If you remember my appt with Dr. E in October, and follow-up blood work in November… (that yielded no results, other than an elevated ANA of 1:160 which they felt was just “nothing” despite my symptoms) – then you remember how crushed I was when she recommended that I go to another doctor.  An Immunologist.

The soonest appointment?  Two months away.

I decided I was grateful she did that, as it pushed me to seek alternative help – I was failing quickly.  I knew I couldn’t make it through the holidays.  At the rate I was going, I would likely end up in bed on a daily basis, if we didn’t get some help soon.  Thankfully, a thoughtful friend who obeyed when God prompted her to contact me… I found a naturopath, Dr. K who has been most helpful in untying this knot.

Well, even though I have made some great progress in only ONE month… I still had that appointment set with the immunologist this week.

Do I cancel it?  But the nauturopath suggested I get tested for Lyme… to rule out any chronic type of infection.

Reluctantly – we went with an agenda in mind.  Ask questions, get Lyme test.

I didn’t have the normal paperwork ready for this doctor, as I knew she had my files.  I really didn’t want to go.  My gut told me to just cancel.  I should have listened.

So I arrive on time to the same “pod” as Dr. E… interested to see just what Dr. G might have to say about my health history, chronic infections and elevated ANA – despite being on a GF diet and having my chronic gut issues on the mend.

Imagine my surprise when a young male entered the room.  He introduced him self, but I heard nothing he said… as I was thinking…”you aren’t Dr. G.”

The greek looking resident with thick accent proceeded to say that he was basically fielding for Dr. G… to figure out just “why I was here.”

The puzzled look on my face must have been apparent – as he repeated, “I know what the paper says… but I want to know why YOU think you’re here.”

{At this point, I’m thinking maybe a barrage of cameras is going to pop out to let me know this whole past year was nothing but an awful joke – and I’ve been filmed as a study for some greater purpose… }

But alas… HE was serious, and I was STILL very confused.

I started in speaking… but I don’t know what words were coming out.  Something about being referred… and my ANA… and he cuts in again.

“Usually people who have had chronic infections seek out an immunologist… you know, people who have been sick a lot, respiratory issues, breathing issues… people who have low IgA… or immune problems.”

Once again I started speaking… and I found myself calming explaining why I was there.

Wait a minute.  WHY am I defending why I’m here?

WHY was HE asking me why I was here?????  It wasn’t a referral *I* asked for.

I had a pile of sheets stapled together in my lap that I had been working on since I checked in… a health history of sorts, documenting different symptoms.  {After about an hour of him talking – I just put it in my folder.}  He never looked anything over… nor asked for those sheets.

I began to explain I *had* chronic infections … for years before I went gluten-free!  Pink eye, yeast, sinus, throat, and most recently the UTI that lasted a month.  I explained I had gotten the flu the past three years, despite being immunized… he listened, and then told me that my IgA being on the low-end had nothing to do with how sick I had been.

Really?

It was almost as if my voice took on Charlie Brown’s teacher when I spoke.  I explained that I had waited 2 months for this appointment and had driven 2 hours to meet with Dr. G regarding what to do next – because clearly the additional symptoms my body had taken on, were NOT normal.  Dr. E didn’t know what to do further, and obviously REFERRED ME here….  A blank look came across his face… and after an hour and half of this – he said he would be “right back.”

A few times he came in and out… apparently talking with someone from Rheumotology.  Why I wasn’t in THAT department, I have no idea…

FINALLY, Dr. G appeared.  A petite woman, around my age… with a delicate face and long red hair.  She was kind… and spoke as though she thought I was here to inquire about celiac disease.  She began explaining to me that being off gluten was very important… as she continued talking I realized she had no clue about me or my history.  When I explained about how my past year went, including my lack of celiac antibodies, and how the GI did my biopsy incorrectly… she began to talk about “non-celiac gluten sensitivity”… again, assuming I didn’t know what that was.

But those people… they don’t have GENES for celiac.  “The auto immune genes for celiac are the difference,” I stated.  My mother and I are positive for those genes – and I have every symptom in the book.

This is where I wonder why common sense doesn’t trump out these tests.

This is where I wonder why well-educated people, can’t simply look beyond their charts and realize… there are people who don’t fit within their boundaries – whose problems aren’t in their head.

If you’ve ever studied MEANS before… then you understand how everyone being designed differently MIGHT not apply to tests in the same way as majority.  It isn’t because they don’t have an issue.  It’s because the TEST isn’t able to show it the same way for all people.

Example: if my lower IgA is REALLY low for me, but it’s not for my husband… than he might not have a problem with colds, infections and the like… while I battle things non-stop because clearly, my body is struggling.  It’s ABNORMAL for me.  It’s not where my body is happy.  My body might not be able to perform at that level… compared to someone else.  A logical thinker would be able to figure something like this out…. correct?

I don’t say this because I want to be diagnosed with something I don’t have … I say this because it’s clear that all of the other evidence points to an answer, and yet it’s ignored without the two things someone has set as the necessary needs for diagnosis.  It’s the same thing with celiac, as it is for Sjorgrens, and I wonder what else.

The bottom line is this – I have auto immune disease genes.  I have every symptom of celiac, and of Sjogrens… and I understand that hypothyroid (and chronic fatigue, and fibro) go with those things also.  I know what these mean also because I *FEEL* it… and I’ve SEEN the effects.

Not because I read it on the internet, or in some book… or created it in my head.

I’m not “just tired” from having 8 kids….

I don’t need more rest… because I could sleep all the time on the days I couldn’t get out of bed.

The pain definitely has triggers.  Cold. Wind. Sunlight.

No.  I do not want an antidepressant.

No. I don’t need anti-inflammatories in the form of antidepressants either….

SO when Dr. G suggested she might refer me to an infectious disease specialist…. I declined.

Truly – I’ve had ENOUGH.

Enough not listening to my symptoms… and enough testing to last me a lifetime.

The best suggestion she had was to maybe see someone from their integral medicine department that dealt in holistic medicine, warning me that it was “really expensive.”  I just said… “well, it’s cheap if they can truly help you feel well again.” She agreed.  I told her I would keep them in mind.

But what I wanted to say was this:

“I clearly have celiac, hypothyroidism and Sjogrens – and you missed it.  I have a leaky gut and multiple vitamin and mineral deficiencies and THAT is what created all of these other auto immune symptoms – thanks to celiac being undiagnosed for years and you ignoring my genetic make-up.  You tell me nothing is wrong… when I’ve told you SOMETHING was wrong because this is NOT normal for me.  I am not “just tired” – this is NOT something a power nap will fix.  Look beyond your numbers on your chart and realize something is going on.”

 

After 4 hours in that appointment, I sat in the blood lab to do some standard checks on my CBC, and a recheck of my ANA…(no test for Lyme BTW), but they were finally testing numbers on my liver, and heart thanks to some advice from the rheumatology department – two important organs that could very well show damage related to the symptoms I’m having.  I was thankful for this… it was something.   I looked around at all of the very SICK people there.  Most overweight.  Many looked tired, defeated, and worn down.

I prayed for our country, and for the people who don’t have a voice, or access to books and information to learn about what to do to be well again.  To the people who eat poorly – to get by… to the people who never make time to take care of their bodies through exercise…  PLEASE.  Stand up for yourself.  Take CARE of that body God gave you.

If your doctor is analyzing numbers like an accountant, but unable to hear/see you as a unique person – designed by God… then GET A NEW DOCTOR.  YOU are worth it.  Your future is worth it.  You are worth being heard… and you have the right to say NO to medicine that might actually make you worse with side effects.  Research all you can before you take anything.

In the mean time – my natural thyroid meds have helped a TON, and my vitamins are doing their thing…  I’m missing sugar a lot – but I’m doing ok, knowing I can work out again and my metabolism is on the rise again.

*** I do want to say there are a lot of great doctors out there… and for most purposes, their testing and numbers are important in diagnosing some major illness.  However, as a whole – they have got to get a handle on understanding the importance of nutrition – how utilizing vitamins and natural options for treatment –  and LISTENING to their patients. 

Do not discount the effect of every bite, every sip, and every breath you take…  healthy for HIM.

“Give thanks to the LORD, for He is good; His love endures forever.”

Psalm 107:1

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