Friday, 13 April 2012

Honestly Sick

Hi all.  I certainly didn’t plan for my hiatus in the blogging would to last THIS long.  I knew we had a lot to tackle and it would be difficult to keep up, but I simply had no idea what was yet to come.  My life is inexplicably bizarre and quite difficult right now.  Describing what has happened to me feels like an insurmountable task, but I will attempt to describe most of it as best I can. 

First of all, thank you to those who have supported me both in real life and online with your words of encouragement, help with my children, general tasks, etc.  The family and friendships our family has been blessed with are literally the only things keeping us going right now.  And God.  No, I don’t mean to give HIM last place; it’s simply that I see God realized in so many of you.  There is a dear, dear friend reading this right now, who is new to my life, but she has been my angel on earth.  She too suffers through this unimaginable existence every day.  Without her, I question whether I would even be alive right now.  Many others in my life have stepped up and gone above and beyond their own comfort levels to help in any way they are able.  Some wish they were able to come inside our home and help me cook, clean, repair, deCORNtaminate, etc., but alas, no one can come in.  We are Fort Knox.  Which brings me to the bizarreness . . .

Since I last blogged, I made a command decision to eliminate ALL medications in my life.  Before you freak out, please know that the two remaining drugs, Diphenhydramine (Benadryl) and a Proton Pump inhibitor (Nexium), were not intended to be long term solutions.  My homeopath wanted me to faze them out.  She probably didn’t want me to cut Diphenhydramine cold turkey, but well it’s kind of hard to cut a capsule in half and that was my only option (remember, all of my meds are compounded).  After some tests results came in, she also determined that the Nexium was impairing my digestion, in particular my fat digestion, and creating low stomach acid.  Her recommendation was to stop the Nexium.  Other medications are currently being compounded that may stop the progression of inflammation and multiple chemical sensitivity. (Corn free compounding takes forever. I repeat: FOREVER. I’m still waiting.) Going “natural” has forced me to realize just how sick I truly am.  I’m horrified by the person I see in the mirror and the way I feel each and every day.  Simply stated, I feel quite awful.

On a positive note, I can at least say that they changes in my diet have allowed me to tolerate not being on any acid reducing medication with fairly positive results.  There are flare ups, of course, but at least that’s something.  Please note, I eat the blandest diet known to man.  Without getting into a lot of detail, I think it’s worth mentioning that I also don’t consume gluten, wheat, soy, rice, dairy and peanuts. “Is she out of her ever loving mind!?”  No, but let’s just say I have VERY good reasons for eliminating those common allergens.  Some of them may be reintroduced to my diet later, but I know not all of them are going to work for me.  I’ll take it one step further and blow your minds again: I maintain a very low sugar diet to combat Candida (yeast overgrowth) and I must also chose foods that are low in acid due to my Intersitiacial Cystitis (bladder inflammation).  Feeding a corn allergic person is extremely difficult.  Feeding me is somewhat impossible, but we’re kinda sorta managing . . . mostly.  I think. (That sounded confidant, huh?)  

Here is the downside to my natural status: I gave up diphenhydramine (AHEM, ya know, an antihistamine).  I’m ashamed to say, but I had been using it every night as a sleep aide.  (Don’t ask for how long . . . you really don’t wanna know).  My regular dose was only 37.5mg.  ONLY.  Hmmm . . . don’t let “only” fool you.  That 37.5 mg was enough to play some SERIOUS mind and health games with me.  That tiny bit of antihistamine was perpetually present in my blood stream and therefore reduced or blocked histamines by preventing them from attaching to their receptors, thus causing symptoms.  They probably weren’t completely blocking all of them, but they were certainly reducing the number of histamines.  Otherwise, I would have been completely symptom free while on them.  It’s really not a good idea to spend one’s life medicated with antihistamines to cover up symptoms.  For one thing, your body will eventually become resistant to the medication and it will no longer work.  Sadly, not a lot of research has been done with regards to long-term diphenhydramine use, but the information I could find was not terribly encouraging.  If you’re currently taking this medication on a regular basis, and feel it’s time to stop, I would strongly encourage you to use a tapering method if at all possible.  I’ll spare everyone the details of my cold turkey experience.  It. Wasn’t. Pretty. 

So it’s gone.  It’s all gone. Here’s where it gets ugly.  (Are you noticing a theme w/ my blogs?)  Ya, me too.  Some day that has to change.  More band aids have been ripped off.  (It’s just as well; the adhesive is likely made of corn.  LOL!)  Well as you already know the corny carpet powder I once used has rendered our finished basement unusable to me, but rooms of safety seem to be falling weekly.  Not long ago we discovered a mold issue in our master bathroom. Okay, I should say I discovered it. My husband has almost no sense of smell. (Ironic, isn’t it?)  We’re very limited on cleaning options, so despite my sweetie’s efforts, the mold still stands (in the shower).  We also have carpet in our bathroom (KICKING OURSEVLES over that one!) and we believe it has retained some mold growth as well.  So simply stated, until further notice: No master bathroom (and closet – it’s inside the bath) for you, MizCastle.  Okay fine, we have three bathrooms and I can still use one of them.  I share it w/ a 3 and 7 year old, but we make it work. Though I must say, their bathroom etiquette is even worse than their father’s. My youngest child’s room is an issue too.  Her room has always been the nursery and therefore has 7.5 years’ worth of baby powder, poo smell cover upper, heavily chemicalled (ya, I invented a word) toys, corny books, polyester stuffed animals and just general ickiness.  Simply stated: A chemical nightmare. I can’t avoid this room all together, but it def requires a mask.  This room will soon be getting a major overhaul, though I doubt I can be the one to do it.  Beyond rooms, I’ve also been subjected to a new toxin: finished wood furniture.  Well yes, the wood is obviously not made from corn, but the sealants & varnish definitely can be.  That’s not good, but what’s really getting me and I must emphasize REALLY getting me, is what lurks inside or even used to lurk inside.  All under the sink cabinetry must now be avoided.  Sure, we gave away all of the those products: cleaning agents, polishes, makeup (ya, ladies ALL of it), lotions, sprays, powders, bubble bath, etc.  Unfortunately, removal didn’t eliminate the issue.  Wood absorbs odor.  As a matter of fact, it does a supremely good job of retaining odor.  So, my under the sink cabinets are now verboten.  Moving on, OH this next one REALLY huts:  My beautiful bedroom furniture.  It’s Broyhill, dark wood, made to last, matches my much lovely king sleigh bed.  Ya, you know where I’m going.  Ten years of various laundry detergents, lotions, powders, etc. have set up permanent residence.  I can’t store anything in my own dresser.  I can’t even put my husband’s clothes away in his chest of drawers without being knocked out from the stench.  It hurts.  We will try some products and probably an expensive ozone machine, but I don’t know that it’s going to end well for my bedroom furniture.  We already had to give away my husband’s old childhood set used by our youngest.  (sigh)  It’s just stuff, I know, but it’s SO HARD to live under such extreme conditions.  I don’t even feel comfortable or healthy in my own home.  There is so much work to do.  Extreme actions must be taken to detox our home.  The largest will involve completely removing all of the carpet and replacing with a safe alternative.  A safe alternative has yet to be found, as chemicals are used on the surfaces of any type of hard flooring imaginable.  Plus, we would need to find a safe place to send me while the work is being done.  I don’t know that such a place exists. My return would be difficult, as I would be exposed to the off gassing of the new product.  Baby steps seem like our best and only option with regards to replacement of any flooring, furniture, etc.

You’re thinking: “That really, really sucks.  Wow. Can you go outside for some fresh air once in a while?  Does that help?”

That’s a loaded question.  The short answer is: “yes”  The realistic answer is: “no”  Let me explain.

Fresh air is a WONDERFUL thing.  As many of you may already know, inside air is actually far more polluted than outside air.  However, there are a LOT of things in my cookie cutter, suburban, squished together with my neighbor, let’s get cozy, neighborhood that reek absolute havoc on me.  It’s spring time!  Yippee!  Everything is green and lush and lovely.  Great.  “Let’s celebrate spring and bring out . . . the grill!”  I love our grill.  It currently serves as our oven as our oven (and a zillion other products/appliances) no longer work.  I don’t, however, love my neighbors’ grills.  They cook corny meat with corny bbq sauce which very much permeates the air sending particles right into my airways.  (Remember a smell isn’t just a “scent,” the scent is actually microscopic particles suspended in the air which are detected by the nose.)  Spring also invites one to start the process of lawn care and maintenance.  This typically involves weed killers and fertilizers for most.  Lawn mowing, well that’s a given and the mower’s gotta be powered by something.  And laundry. (Okay I cheated, laundry is year round, but for this purpose, it really is a part of my outdoor environment).  Grilled meats, heavy chemicals, gasoline, and dryer exhaust render me SO. VERY. ILL.  I simply cannot go outside when any of the above is taking place.  I literally almost passed out not long ago when I accidently went outside without my mask and sucked up a bunch of fabric softener from next door.  I was completely incapacitated for over two hours.  Weed killer from the yard next door, which is essentially mine as we are separated by only a few feet, disabled me from going outside for FOUR days.  Had it not rained, I’m sure the wait would have been longer. 

Inside is tough.  Outside is tough.  But remember: it’s honest.

This is honestly how allergic I really am.  To corn. To corn based chemicals. To chemicals.  I don’t even know what to call this anymore.  It’s all encompassing. 

Despite all this, I remain hopeful and determined.  I continue to remain devoted to my faith, as I believe God will use me for a greater good or purpose . . . in sickness and in health. 

Thursday, 16 February 2012

When Your Medications turn on You

So things aren’t any better.  I’m still home bound, but this really isn’t a surprise to me.  My poor health has been many years in the making, it just so happened to all come crashing down within the last couple of months. Sigh.

Now, about doctors, meds and such . . .

Because I think most people like to hear traditional diagnoses when they know someone is sick, then I’ll provide you my list.  Some of you may also be suffering with these conditions as well. These diagnoses used to provide me with a false sense of comfort until I realized some of them meant little in application because they were simply a diagnosis of exclusion and none of them have a cure. Over the past 11 years, I’ve been diagnosed with: Irritable Bowel Syndrome (IBS), Interstitial Cystitis (IC), Endometriosis, Secondary Infertility, Temporomandibular Disorder (TMD), Gastro Esophageal Reflux Disease (GERD) w/ Hiatal Hernia, Chronic Insomnia, Osteo-arthritis of the shoulder, and Candida.  Additional problems I experience, but never sought an “official” diagnosis of include: chronic neck & shoulder pain/tightness, Chronic Fatigue Syndrome (CFS), Multiple Chemical Sensitivity (MCS) and occasional migraines. 

I no longer give a lot of credence to diagnoses like IBS, IC, TMD, Chronic Insomnia, CFS, MCS and migraines because I tend to believe most of them are connected to larger root causes.  Each is a compellation of symptoms thrown together with a name slapped on.  Please know, I’m not at all making light of their severity, but think about it: “What exactly is Irritable Bowel Syndrome?  What in the heck does that even mean!?”  “Are my bowels angry with me?  Are the staging an attack!?” To me, IBS is code for: “We scoped you ever which way but where & we have no freaking idea what’s wrong with you.  Sorry.  Here’s a nice diagnosis and some pills to help with your awful symptoms.” 

My personal feelings on 11 years of treating my symptoms and not the cause:  See, you feel like crap, but at least you got a diagnosis, perhaps a recommended diet and a prescription. You don’t feel like you just wasted your time, do you?  Yes, you’re still in pain, but those meds kinda help, right?  So you just go on.  Or maybe you keep fighting and continue to try to find out WHY this is happening to you.  I worked very hard with a number of doctors, specialists and alternative health practitioners trying to combat all of the issues listed above, but I just got sicker.

When I found out I was allergic to corn, I discovered that ALL of my medications and supplements were off limits.  “No more covering up those symptoms, MizCastle! It’s time to face reality.”  The reality is the vast majority of doctors know next to nothing about a corn allergy.  EVEN the allergists!  A corn allergy is not well studied or understood.  It’s simply not on their radar.  My allergy has virtually impaired them from helping me.  The office itself is loaded with things that can render the corn allergic to have a reaction.  What do you think is in those hand sanitizers they have stationed everywhere?  Or the pad they wipe your arm with before drawing blood/injecting a needle?  CORN based Ethyl alcohol!  And be wary the latex gloves.  Do you see powder? Cornstarch!  Those are just a few examples.  Anything they could offer you is likely to contain corn. As one of my corn allergic friend’s stated: “You’ve tied both of their hands behind their back.”  Doctors, exam rooms, hospitals, etc. are something akin to standing in the middle of a corn field for the corn allergic.  Actually, if I had to choose between two evils, I’d take the corn field.  At least the corn field isn’t administering corn directly into my veins by way of a dextrose laden IV.  Unfortunately, traditional doctors are not usually able to do a lot for someone with a corn allergy.  Though I’m sure there are physicians who have tried and continue to try.  And likewise, there are also a few lucky corn allergic people who are helped by them.  I, however, am not one of them.

“Okay, well what about alternative health?  You mentioned a homeopathic doctor in a previous blog.”

Yes, I did.  As much as I would love to sit back, relax, and totally put my life into the hands of my well qualified homeopathic doctor, unfortunately that isn’t a complete reality either.  To her credit, she’s gotten closer to what I believe are some of the underlying causes to most of my pain.  She is the one who diagnosed my corn allergy after years of symptom band aids.  But homeopaths must use medications, supplements, dietary aids and herbs to cure.  (Hey, they’ve got to use SOMETHING.)  Also, she doesn’t know much about the complexities of a corn allergy.  Again, it’s not on her radar, so I have to educate her about this ubiquitous allergy.  She recently diagnosed me with a condition called Leaky Gut Syndrome.  That sounds about as pleasant as Irritable Bowel Syndrome, doesn’t it? Some medical professionals don’t believe this phenomenon even exists, but there are now tests that can be done to prove it.  Given my current condition, no one felt it would be in my best interest to put me through what would likely be another corn allergic experience.  Also, I am considered to be a very classic case.  To best explain this condition, I will borrow some text from a book I’ve been reading: “Improve Your Digestion: The Drug-Free Guide to Achieving a Healthy Digestive System” by Patrick Holford. 

Dr. Holford says:
“Normally healthy foods can also become toxins to the body if they are not digested or absorbed properly.  We are designed to digest our food into simple molecules that can readily pass through the digestive tract and into the bloodstream.  If, however, a person doesn’t digest their food properly, or if the gut wall becomes leaky, incompletely digested foods can enter the blood.  There they are likely to alert immune ‘scout’ cells which treat them as invaders, triggering an allergic reaction.  The ensuing battle results in a complex of chemicals that are themselves toxic and need to be cleaned up.”

“The integrity of the gut wall is therefore critical to our health and bodies work hard to maintain its proper permeability in the face of considerable ‘assault’ on a daily basis.  It is now recognized that this permeability, while remarkable in its complexity, is vulnerable and subject to change, depending on the integrity of the gut wall and the substances it is exposed to.  Increased permeability, far from enhancing the transport of nutrients, allows the entrance of toxins and improperly digested food particles which can give rise to a number of health problems associated with ‘leaky gut syndrome’.



Symptoms and conditions associated with leaky gut syndrome:


·        acne
·        eczema
·        arthritis
·        fatigue
·        autism
·        food/chemical sensitivities
·        childhood hyperactivity
·        inflammatory bowel disease (Crohn’s, ulcertative colitis)
·        chronic fatigue syndrome
·        irritable bowel syndrome
·        chronic pancreatitis
·        psoriasis, dermatitis
·        celiac disease
·        urticaria (hives)
·        depression, mood swings
·        viral, bacterial or yeast infection
·        diarrhea/constipation






There is only one chapter on leaky gut, but entire books have been written about this condition.  My homeopath is very familiar with it.  Curing leaky gut can be a long  process even for a non corn allergic person.  And of course, there are no guarantees.  But are there really any guarantees in life?  A regular, non-corn allergic person, would proceed to take a variety of probiotics, digestive enzymes and a whole slew of vitamins to aid in their healing.  Dietary changes would also be required.  The dietary changes can be hard for many to master, but they are even more difficult for the corn allergic because we even have trouble finding safe, corn free, healthy food, like produce, for example.  With the exception of sweet potatoes and regular potatoes, I can’t even buy produce at a regular grocery store because it has all been gassed and waxed.  Spring will be a better time nutritionally for me.  Probiotics are an extremely important part in healing the gut because they restore good bacteria.  Unfortunately, finding a corn-free probiotic is like finding a needle in a hay stack.  Finding supplements and vitamins in general is incredibly difficult for the corn allergic.  Many of the inactive ingredients used as aids or fillers are often derived from corn.  The capsule and container can be made from corn and cornstarch can also be used as an aid in the manufacturing process.  To stress just how difficult it is to find corn-free supplements, please know some corn allergic people must have their vitamins made by a compounding pharmacist. Should a corn allergic person find a bottle with a label stating the vitamin/supplement is free from corn, they are wise to be leery and should always contact the manufacturer.  Often times, after a call or an e-mail to the manufacturer, I’ve discovered the corn free claim isn’t true.  “Well how can that be?” you ask.  To some manufacturers, using a chemical (i.e. micocrystaline cellulose, L-leucine, etc.) derived from corn means the product no longer contains corn because the “protein has been rendered out.”  This statement gets bandied about a lot by supplement and vitamin manufacturers.  Sadly, a very allergic to corn will still react to derivatives of corn.  I’ve read hundreds of posts/blogs from people stating they have had reactions to corn derived chemical additives or aids.  I am among them.  Even when a corn allergic person finds a supplement that is proven to be safe, they must never let their guard down. One woman I know had recently been taking a probiotic she had confirmed with the company to be corn free.  She had been taking this product for some time, started a new bottle and began to notice allergic symptoms.  When she couldn’t pin them down to anything in her diet or environment, she contacted the company again.  As it turns out, the company changed the product to make it dairy and gluten free, so now the fermentation medium contains carbohydrate ingredients, which includes corn.  So even when someone has gone to great efforts to find a corn free supplement they desperately need; it can change at a moment’s notice. This happens to corn allergic people EVERY SINGLE DAY.

When I decided to start this blog, I couldn’t decide if I should even make corn the focus.  I knew there was a much bigger picture involved in the process of my health.  A part of me really didn’t even want to get into everything else.  “Who wants to hear about 11 years worth of someone else’s medical history?”  I certainly didn’t want to appear as someone looking for pity because I’m not. If anything, I hope to help others. But the catchy “My So Corned Life” title (borrowed from the one season hit from my youth), won out.  In all seriousness, I gave corn center stage because corn isn’t on ANYONE’S radar. I felt it deserved to be the main attraction.  People need to know what it is like to avoid it and try to live in a world where it simply won’t go away. People need to know what it’s like to be sick and discover your medications and supplements contain one of the very things that make you feel so awful.  This is happening to more and more people today as food and environmental allergies are growing rapidly. 

Healing has begun and healing will continue, but it takes itty, bitty baby steps as I go through the life changes both in body and spirit and deal with the uncertainty and back tracking that is part of My So Corned Life.