Living with an Auto-Immune Disease, part 2

Living with an Auto-Immune Disease Part One  <---- click this link to read my previous article for some useful background.

I’m not afraid of a challenge.  In fact, the love of adventure is one of my strengths.  This has come in handy when going through life’s inevitable transitions.

The Trouble With Doctors

I have experienced some rather irritating and progressive health challenges over the past 2 decades.  Since my early 20s, my ability to process and digest food has cumulatively gotten worse.  After having my annual physical several years ago, it was discovered that not only was I extremely anemic, but also had several low B12 levels.  These results triggered my family doctor to recommend a gastro-intestinal specialist to perform an endoscopy/colonoscopy.  I was 37 years old when they diagnosed me with Crohn’s disease.

Not much is known about Crohn’s disease, or other auto-immune diseases.  From what I have learned, it all boils down to one’s body attacking itself.  Having an auto-immune disease is a literal manifestation of being one’s own worst enemy.  Flying scientifically blind, there is not much that Western medicine can do to root out the cause.

Paying a substantial sum of money for health insurance, I feel obligated to continue in my attempts to get some expert knowledge and guidance on how to manage with this intangible tangled up mess that my guts have become.

Any diet restrictions?  “No.”  But I was advised to try and get more iron into my diet.

Any lifestyle guidance?  “Try and avoid stress.”  o.O  Really?  Is that even attainable, doctor?  And I begin to argue with the doctor about how it’s normal to have stress in our lives, but I want to learn how to manage it better.  “Take these pills,” is her easy answer.

I admit it: I am a stubborn patient, unwilling to delve willy-nilly into taking a rainbow of medications for the rest of my life simply because the doctor said so.  But I don’t want to cause a scene, so I take the samples she hands me and make my appointment to see her again for my 4 month checkup.

Another season passes and I’m back at the gastro-intestinal doctors’ office.  She’s not going to be happy with me.  I’ve not been following her protocol, exactly.  I admit that I’ve only been taking 2 of the pills 2x/daily instead of 4 pills 4x/daily.  She shakes her head and says to me, “This prescription is based on researching plants.  It’s “natural” and the least amount of medication that I feel you need to be on.  Take all 4 pills, 4 times a day as prescribed.  Are we clear?”  I nodded, feeling chagrined and charged up about it at the same time.   Even though I had streeeetched out the sample packs she’d given me, when my pharmacist called to tell me that I could go online to get a good coupon for the drug, I knew just how strapped I was going to be if I started to really take it full-force.  Everything told me not to get the ‘script filled.

 “Oh?” she tilts her head and looks up at me from the little laptop from which she has been reading my medical chart information.  “You’re not taking B12 supplements anymore?” 

I tell her that I haven’t been feeling as tired lately, that the tingling I had felt in my fingers and toes were not present and hadn’t been for a few months now.  I tell her that I voluntarily took myself off to take a little break.

My doctor looks at me as if I were going crazy.  “What?  You can’t just take yourself off of something just because you feel like it,” she says with incredulity.

“I’m ordering a lab on you to check your levels, Rachael,” she states matter-of-factly.  Awesome!  I want to know what’s up with my levels, too.  It’s been about a year since my last blood test.  Seems about time to me.  That’s what I’m paying exorbitant amounts of money to BlueCross/BlueShield for insurance to cover all this, isn’t it?

“Do you get out into the sun very often?”  Heck no, and when I do, I try and cover up if I’m going to be out for more than 5 minutes.  Having rosacea (another auto-immune disease, this one triggered by sun-exposure), I try to minimize exposing myself to the beautiful rays of the sun for too long.  She types up something into the computer.  “I bet you are vitamin D deficient.  You need to be taking vitamin D,” and here I’m told that she’s writing me a prescription for extra strong vitamin D, plus I should be taking supplement Vitamin D over the counter in addition.  I snort a little to myself and cross my arms.  I do not like where this is going.  It seems extreme to me.

As she sees me out, she reminds me to take those 4 prescription pills, 4 times per day, to call her if I have any problems, but only if I follow her regime.  She makes it clear that she wants to support me this way, and this way only.

I get a call in about a week from one of the nurses at the office with my blood results.  Guess what?  My B12 levels were through the roof.  I had to ask the nurse to repeat herself when she told me.  I ask if this means that I should not be taking the B12 supplements.  “Don’t take those; but you do need to be taking vitamin D.  Your levels are low in vitamin D,” and on she hops to the prescription drug band-wagon.  

I’m still a little flustered and confused and ask for the nurse to send me a copy of the results.  Somehow, this is a major challenge.  “If you want, I can mail a consent packet to you.  Sign and return it to our office, then we can give you a printed copy of your lab results.”  They are not able to send me an email consent packet.  I have to either drag myself back downtown to their office to sign, then wait for them to mail the results to me, or they can mail the consent packet to me, then I mail it back, and then they will then mail the lab copy to me.  

Needless to say, I was fairly frustrated at this point.  I followed their protocol and kindly requested that they start the process at once.

It was at this point that I returned to alternative, holistic medicine. This time, I found a doctor that did full blood, urine and saliva panels before offering a personalized non-prescription supplement regime which would be based on my results.

The results were telling: 

• Extreme anemia- my Iron scores an 11 on a scale that normal people range between 50-170; my Ferritin scores a 6 and the normal range is 10-190.  Transferrin Saturation: 3%, pretty low when normal ranges from 15-50%  No wonder I'm so freaking tired all the time.
• Low HDL cholesterol-  ("How is having low cholesterol even possible in today's American diet?" I ask her.  She begins to explain the different types of cholesterol to me and what my test results suggest.  She's very thorough.)
• High B12- on a normal person, the B12 range should be between 213-816.  I score 832 and hadn't been taking B12 supplements for 6 months prior to this lab.
• High NT-proBNP- that has something to do with weakening heart muscles and I'm ranging significantly high for my age.  She said that my score of 143 is within a range for an elderly person, or someone who has had trauma to their heart.  She talks to me about Broken Heart Syndrome and says she sees from these results that I have had significant stress in my life.  Her compassion brings tears to my eyes, but I can't go there now.  There is still more to learn from my lab results and she proceeds.
• High triglycerides-  (I've daily been taking fish oil pills since first being diagnosed with this in my mid-30s to help with the imbalance; having high triglycerides is linked to increased risk for coronary heart disease, she tells me.)
• Moderate C Reactive Protein-hs- This measures the general levels of inflammation in one's body.  Should be less than 1.  My score is 2.7.

Great, it's true, right here on paper: I'm dying a slow and horrible death.

Not really, but the system makes me feel that way at times when everything my body can scientifically tell them is reduced to numbers on papers resulting in a longer string of diagnostic codes all for the benefit of acquiescing to insurance coverage and reimbursement.  I think I'm going to be sick.

So, with this greater scientific knowledge, what does this mean to me?

It means that my acupuncturist was correct all along: The body, mind and soul are all intrinsically and beautifully interconnected.  When there is imbalance, the entire being suffers.

I'm on a journey now to figure out how to untangle this mess I've made for myself.  I go back twenty years to the very start of my health problems, when I ran away from a huge transgression, and I find the root of it.

Now I am certain that I am my own worst enemy, and my body was simply trying to wake me up from that awful course.