Monthly Archives: January 2015

How Important Is a Diagnosis?


I enjoyed a talk with my mother the other day.  We live almost 6 hours from one another, so Facebook and phone calls are the way we keep our relationship tight-knit.  She was talking about her Graph vs. Host disease from her stem cell transplant, and as she was describing to me her struggles, she said, “it’s a connective tissue disorder of some type…”

I empathized with her. As we knew I had some something of that nature, that I’d later relate to all of the auto immune struggles I have.  “Oh, that reminds me,” she said.  “I bet you have EDS.” Ehlers–Danlos syndrome (EDS)

Yes mom,” I said.  “I know I do.”

It’s one of those things.  A name.

I haven’t been “formally diagnosed” – but I have 5 our of the 5 type markers that they look for.  Several of my children do too.  It’s common with POTS, Postural Orthostatic Tachycardia Syndrome, a metabolic disorder that basically means people struggle with all of the things your body is supposed to do automatically.  Often times people pass out, unexplainable as to why – but I can tell you what makes me better or worse.  This is why my blood pressure doesn’t regular when I stand up – and almost pass out, or I can’t tolerate extreme heat, or extreme cold… and it’s probably partly to blame for the struggles my digestive system has.

It’s one of those things I relate to … just like celiac, or MS… but I don’t really talk about.  I’m not about “celiac awareness, or MS awareness, or POTS awareness… or even EDS awareness…”

I prefer to know they’re all inter-connected because my body is a system, but they won’t own me.

So at my appointment yesterday I asked my ND if it was ok to never have a diagnosis for some of these issues.  I mean, I know what we’re dealing with – and know how the AI process works… is that really important, in the case of some medical emergency?  Do my records need to have me labeled?  She reassured me that I am doing all of the right things, and that in the event of a crisis situation, that isn’t going to change what someone might need to do to save my life.

I thought so, but it was nice hearing it.

Then she proceeded to tell me a story about another patient of hers with MS.  The gentleman has been going to their clinic since the early 80s.  When he was told by his good friend and neurologist at KU Med that he had MS.  The neurologist said, we can go through all of the testing, and I can give you the drugs – if you want.  But they won’t make you better….  in fact, they’ll probably make you worse.  You’d be better off to go home and do all of the things your mom told you to do while growing up.  Eat right, exercise, get good rest, and take care of your relationships.”

Simple enough,  right?

But the story didn’t end there.  This was before HIPPA laws were a big deal, and remember, the neurologist and patient were good friends, so the neurologist’s wife called the patients wife, and told her, “You get him down to Riordan Clinic.  You learn what good eating means, and figure out what his body is missing.”

That was almost 30 years ago.

He lives symptoms free today.

I love stories like that…  Because I know they’re the truth.  They give me hope and remind me that I’m on the right path.  While I enjoy being in groups for support of the various auto immune diseases I battle – I really am there to encourage others to dig deeper.  I’ve met some amazing people, and been able to encourage others.  God has helped me build support group to help others learn and encourage one another in this lifestyle that is necessary for me to function.

The name isn’t any diseases… because ultimately that doesn’t make me well.  Addressing what my body needs does.

Healthy for Him.

“Be not wise in your own eyes; fear the Lord, and turn away from evil.

 It will be healing to your flesh and refreshment to your bones.”
Proverbs 3:7-8

Dysfunction-Junction, What’s Your Malfunction?

Happy New Year!  I just wanted to give you a  quick up date on how things were going with my oldest, and his post frenectomy therapy.  He has made a lot of progress, but I know once we get in there to do expanding, things are going to help even more.

Just to give you an idea of what we’re working on, and why it’s so important for his stress,  I’m sharing some super informative videos.  If you have auto immune disease, adrenal failure, TMJ, jaw pain, grind your teeth, troubles sleeping…  just watch it, it’s pretty amazing.

I’ve been considering why I got my braces on – how much sicker I got.  You see, most orthodontists, even now, are lining teeth up based on aesthetics alone.  They’re looking for a jaw match up -and not considering, “Can this palette house this tongue?  Is this going to cause chronic stress on the patient?  What about chewing?”

So some things to think about are:

* Are you a mouth breather?

* Do you often wake up in the morning with a dry mouth?

* How is your posture?

* If you had braces – how did your adjustment take?

* Did you have molars removed before adding braces?

*Have you had any chronic headaches or jaw pain?

* Did your mother ever tell you that she had troubles nursing you?  (Nipple soreness, poor latch, failure to thrive?)

* Do you get motion sickness or have you had a baby chronically cry in their car seat?

Myofunctional disorders can trigger a lot of issues.  Multiple things may have contributed to them, including taking folic acid while pregnant, (vs. methylated folate), as well as genetics and a grain filled diet.

All of this inflammation does contribute to gut health and your immune system.  It’s pretty crazy… but true.

Now here is why it’s so important.

Do you see what the red arrow is pointing to?  That’s the stress in his neck on a muscle – from straining.  It’s because the muscle (his tongue) is so weak… and the front part of his neck to support his airway.  This is why he sleeps with his mouth open.  If you look at the blue line and arrow – it shows how he holds his head forward to open that airway also, causing a slumped posture.

Now check out his cheesy smile picture (this is part of the file we needed, so no, he doesn’t normally smile this way).

As you can tell, you can see WAY too much of his gums – because his palette is way too small, his tongue also doesn’t fit into his mouth.  This was before his procedure, but you can tell how tight his top lip was tied.  He couldn’t even shut his mouth!  These teeth – look like this after 3 sets of braces, and 2 permanent retainers in, and him wearing his retainer about 85% of the day, and every night. Disappointing, yes?

Well, I’m hoping once we get the appliance in his mouth and start moving forward later this month, I will have some awesome pictures to share with you on his progress.  I can tell he’s made a lot of headway, but I know this hasn’t been a lot of fun for him.  I’m grateful our functional dentist/orthodontist is working with our youngest of kids so they never get to this point.

It’s been a bit to swallow all of this – financially and emotionally.  Something that could have been addressed when he was a week old, vs. all of the trauma we went through with feeding him, and the specialists we saw, etc.  As a good friend mentioned to me – it has honestly been a post-traumatic stress syndrome for me.  I felt it each time I had another baby and we attempted to establish feeding…  and I literally felt it now.  All of those emotions came RUSHING back, along with a lot of anger to the hurt people caused.

I wanted to scream at the doctors, and the nurses, and all of the people who were so discouraging to me when my son was an infant.  All of the pain I had stuffed inside just came out the night before his procedure, and the day off.  (I should have had you pray for my husband!  He is such a gift to me!)  It was as if I wished they could apologize, or I could get another chance… but I know that is impossible – and nothing would give me back what I have lost, or what he has suffered.

Financially – we’re paying for 3 sets of braces for this kid – now sinus surgery, and getting his lip, tongue and buckle ties released… all of these sessions with the chiropractor at $50 a week.  It all adds up, it’s out of pocket and most of it without insurance coverage.

Thankfully – we are able to make it a priority, and afford it…  but other things have had to take a back burner.  I have several kids with multiple issues we’re trying to address – and then there is me.  It’s been a little difficult to juggle all of this – but God keeps me strong, and positive. He definitely gave me my husband for a reason.

It frustrates me that western medicine and conventional dentists/orthodontists don’t look at the function of people to help heal them.  I’m so grateful to God for this journey though.  I can’t say that enough.

I remember praying and telling God that I would share this with the world – anything I learned – because I knew it was Him who continued to save me during the process of realizing how sick I was.  I don’t usually talk about my struggles anymore, to just anyone – unless I know someone else has similar things that can empathize.  Most people who haven’t experienced that utter shut down of their body, simply can’t (and often don’t want to) understand.

They have a body that regulates temperature, and blood pressure, and digestion.  I do not.  They eat more than 5 foods and don’t have to consider so many food issues for their family.

What I do have, is… I have a heart for people now – and I recognize that I used to push away what I couldn’t empathize with before.  So many people have struggles we can’t see, and I didn’t think that way before.

Thank you God for not pushing me away and helping me to wake up and see the Truth.
It’s the second day of the new year…  and more importantly, it’s a new day!  Praise God for that gift.  What are you going to do to be Healthy for Him this year?

Check out this video on why jaw pain shouldn’t be ignored.

This video explains myfunctional disorders as well.

Pray for our up coming appointment with our current orthodontist.  I’m unsure of what we need to do next.  I’m not sure how much he believes in this process.  I want to give him the benefit of the doubt, as he said himself that 30% of his patients have issues with the result not “staying” and needing a permanent retainer.  That’s a significant number…

“Behold, I am doing a new thing: now it springs forth, do you not perceive it?  I will make a way in the wilderness and rivers in the desert.”
Isaiah 43:19

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