MSG Detox

So I can find the link when I need it, here are detox strategies for accidental MSG consumption with glutamate toxicity.

When Balloons Are Scary

Picture via Google Images.

I recently shared about my latex reactions over on my Stroke Of Grace blog. I promised to provide more details here. These details are taken from the replies I gave on this thread on Facebook.

Picture via Google Images.

Reply Details:

I was only touch reactive most of my life. I never had airborne issues until about 5 or 6 years back when a kids school craft sent me to the hospital. I was taking harsh medication at the time that was bringing rapid changes to my immune system and I think that's what threw the switch to severer reaction.

About our church:

Church leadership is aware and has been beautifully accommodating to us. It is a large church. Two of the three pastors have been gone this week (hospital and death in family) and this one just sort of slipped in under the radar. I imagine it was someone's birthday in a Sunday School class. Nothing malicious and they would have been horrified to learn the ripple effects to our family, I'm sure! I'm just ever-so-thankful that we got there at the exact time to see and avoid the danger!

To the question, "How do shop?? Most stores nowadays sell balloons."

I do as much shopping as I can online. Stores that sell them, as long as they aren't inflated and are in a package, I'm OK as long as I don't handle or hang out by the packages. Last year, I scared a friend when we were in the party supply department enough we had to do an impromptu overview of where to find the Epi-pen I always carry, etc. I ALWAYS carry Benadryl too, and pop them liberally, at the slightest first signs of possible exposure. Most places only have the mylar (foil) balloons inflated in the stores now (at least to sell, unfortunately, you never know when/where you might run into them in a display). If a stores sells inflated latex balloons, I leave and don't go back! 

I haven't even met my son's school teacher this year (we do all our communication via email) because his school uses balloons in crafts. Before going to anyone's house, party or event I call first and don't go if they have recently had balloons or rubber gloves on premises. We also have to call any restaurant before we go to make sure there are no balloons. 

Fortunately, most kitchens now use vinyl gloves so food contamination is rare (I just have to watch fancy stuff like chocolate shell bowl formed around a balloon), but have had to get up and leave in the middle of "safe" restaurant meals before if other guests bring in balloons, like for a birthday party. I can only use one of the two main medical health care systems in town because they a relatively latex-free while the other hospital may still use latex in gloves or some of their other supplies. I also have to watch rubber bands (not allowed in our house!) and several other every-day items, but unless I touch them or they "snap" near me, most of those things don't release enough air borne particle to significantly impact me unless I touch them. New items like tires or certain paints in an enclosed area can make me reactive until they have aged and settled enough (can take weeks or months) that I have to be really careful in things like walking into Sam's club (they have a big automotive area including tires, right at the front entrance).

Also, it depends on the quality and manufacturing process of individual balloons. As a general rule, the cheeper a balloon, the lower the quality of material and more readily it sheds latex particles into the air. I have actually been around very high quality balloons without reaction. But typically folks grab the least expensive (a.k.a. most dangerous as far as latex shedding goes) balloons they can buy for party decorations, crafts, pranks, etc! And please, NEVER pop any kind of latex balloon anywhere near me - fantastic way to spread a ton of allergen-particles far, wide and FAST!

A friend replied:
Thankful that you were able to avoid a dangerous situation! My sister has a latex allergy too but only if she touches it. I'm also glad that you posted this. Helps to better understand why hospitals near us do not allow any balloons unless bought in their gift shops (all latex free).

Short, very helpful article! Please take 2 minutes to read!
http://invisibleillnessweek.com/2015/09/24/now-i-know-better/

Original post:

We missed church today. Got up, ready, and even into the church parking lot, only to see someone carrying balloons into the church. (I am HIGHLY reactive to LATEX and even going into a room that has balloons in it could send me to a hospital via ambulance!) Our student driver didn't even get to park. Rick simply said, "We are not going in there!" and directed him right through the parking lot and back onto the main road. 
I was disappointed as I haven't been out of the house in a week, but just getting up and ready, a quick stop for bagels on the way, then picking up a couple items from the store on our way home, I came home (back home by 9:30!) and slept HARD for over 2 hours! (Sad that I slept right through the internet feed of our services so I didn't even get to see those!)
Guess I'm not bounced back much from surgery yet. Counting it God's grace that we pulled into the parking lot at the exact time the balloons were being taken into the building so I didn't encounter another allergic reaction in my already stressed body!
‪#‎MyInvisibleFight‬ ‪#‎InvisibleFight‬ ‪#‎IIWK‬ ‪#‎IIWK15‬ ‪#‎LatexAlergy‬‪#‎WhenBalloonsAreScary‬ ‪#‎CrazyBody‬

Picture via Google Images.

For more latex allergy news and resources, be sure to click on the tag below or the resource link in the right side bar!

In the Garden

I just spent 2 hours out working in my garden yesterday evening. Had a good talk with  our 9-year-old about the meaning of the word "prune". He was so cute, talking about when he got baptized earlier this year his feet got all "pruney" from being in the water. grin emoticon But we did get down to the fact that Jesus must clean/prune us continually to bring us into the shape of His will, just like we were doing to our roses.

I was pretty hard on my plants, leaving only about 6 healthy blooms and a bunch of buds behind (on a total of about 18 rose bushes!) so it looks pretty stark right now. But each cut was made with care and purpose, knowing that by my birthday at the end of the month, I will have a glorious garden full of healthy blossoms, all on nicely trimmed and shaped plants!

I take comfort from my parent's story as newly weds. They had several rose bushes under the kitchen window. Mom was having horrid allergies, so Dad went out and brutally shopped them all nearly down to the roots to try to kill them. They came back healthier and prettier than before! So when the devil sets out to destroy me, God can intend the same season of harsh pruning for my benefit.

I am the Real Vine and my Father is the Farmer. He cuts off every branch of me that doesn’t bear grapes. And every branch that is grape-bearing he prunes back so it will bear even more.

John 15:1-2 (The Message)

He cleanses and repeatedly prunes every branch to make it bear more AND richer AND more excellent fruit!

(First published July, 2015 at Harvesting Hope from Heartache, copyright, Jennifer Saake)

Mast Cell Activation?

Since childhood, and worsening with age, I have a multitude of allergic type reactions, to bug bites, cigarette smoke, scents, some personal care products (mine or worn by others), perfumes, chemical cleaners, certain animal hairs (wool, rabbits, bears and a few specific cats or dogs) Band-Aids, medical tapes, balloons, freshly repainted buildings, new construction, carpet glues even months after installation, a few specific foods and food additives, herbs, medications (like every narcotic known to man - no "good drugs" for me!), heat, sunlight... Symptoms range from redness, itching, hives, tingling tongue, neurological issues, to migraine headaches and vomiting, to racing heart, tight throat and lungs and even full blown anaphylaxis. For several years now (and under doctor's orders), I've rarely miss a dosage of Zertec every 24 hours. When I forget at bedtime I'm in fullblown reactive mode, without any other trigger, simply to life, by the time I wake up the next morning. I carry Benadryl and an Epi-Pen at all times, because I still have plenty of break through reactivity with various exposures. I have taken a few ambulance rides for more sever reactions.

Allergy testing says I have a true allergy to DUST, that's it. Oh, and to my Albuterol inhaler (that one wasn't a blood test, just the allergist's first hand observation when he had me use it in his office). Arrrgggg! Now don't get me wrong, I'm happy not to be allergic to anything else. But with classic allergies there are usually specific treatment regiments. If I'm not allergic to these things, then doctors aren't quite sure what to do with me. My allergist told me that he believes my anaphylaxis to be phyco-sematic, but since I've even had some of these physical manifestations, visibly witnessed by others, when I've been unconscious, I find this a little hard to accept. I'm more prone to think that, for many doctors, if they don't have a blood test with readable results that they fully understand, in their minds often the illnesses simply "do not exist" because their testing doesn't say so.

I've been offered a variety of explanations, some of which may partially answer the riddle, but nothing that fully satisfies yet. The first explanation has been Multiple Chemical Sensitivity (MCS). After the allergy testing came back without answers, the idea of toxicity was introduced, that rather than being allergic to things, I'm having toxic reactions. I think these two may be on the right track, but don't offer a full answer. Through hours of research (special thank to Danette Hillier-McVeety, of the Ehlers-Danlos (and all related disorders) Support Group, for answering initial questions and pointing me down this investigational pathway!), I personally think we need to investigate Mast Cell Activation Disorder (MCAD) or even perhaps Mastocytosis (the sufferer has too many mast cells to begin with, whereas with MCAS, they are either misshapen and/or release too much histamine and heparin) as it truly seems to me that my own body is overly active in histamine production and it doesn't take much to push it over the edge into full blown reactivity! I'll be addressing these concerns with my doctor this summer. In the meantime, I need one place to list resources I'm finding:

Mast Cell Activation (Always Well, talks about some testing that can be ordered. "In Mastocytosis, the problem can be making too many mast cells or having incorrectly shaped cells.  Very little is understood about Mast Cell Activation Disorder, which shares symptoms with Mastocytosis, but the usual clinical markers are not always present.  It’s theorized that in Mast Cell Activation Disorder, for unknown reasons, one’s mast cells become hypersensitive, ‘behave badly’, and thus are easily triggered to release their contents.
"Mast Cell Disorders are not the same as Multiple Chemical Sensitivity.  But some people with MCS may be incorrectly diagnosed and actually have a mast cell disorder.  In his article called The Role of the Brain and Mast Cells in MCS, Dr. Gunnar Heuser, MD described how he tested a number of his MCS patients for markers that indicate mastocytosis or a mast cell activation disorder. A surprising number turned up positive.  Dr. Heuser postulates, '...that chemical injury can trigger a mast cell disorder which in turn can cause MCS.”)

Allergies, Fibromyalgia or Mast Cell Activation?

Mast Cell Activation Disorders (fromUpToDate)

Mastocytosis Explained

Hyperadrenergic Postural Tachycardia Syndrome (POTS) in Mast Cell Activation Disorders (I "flunked" or "passed", depending on how you look at it, my tilt table test with flying colors, years ago.)

Mast Cell Diseases (Wikipedia)

Mast Cell Activation Disorder and Chronic Illness (Methylation)

MCAS Guide

Diagnosis Histamine Intolerance (scroll down past the adds, yes they are trying to sell their products but the information may still be helpful)

If I understand correctly,  Mastocytosis can only be confirmed with a bone marrow biopsy and MCAS can be confirmed with a blood test.

Allergic to The Sun

I have a friend whose daughter has fairly recently developed Photo-Sensitivity. Because I had questions and think others here might benefit from the information, here is a list of medications know to potentially trigger this problem.

From Facebook

Edited to add an except from another blog post where I wrote about how this applies to my own story.

...what I have simply referred to as "hives" ever since I got home from the hospital, is sort of like hives in that it seems to be an allergic reaction, likely triggered into activation by one or some of all the medications I received in the hospital (no idea what one or ones at this point), but not to any typical triggers, but now a reaction to light, specifically the sun, itself. So, almost my entire left (stroked) arm is photo-sensitive to some degree or another. One area of my right, just above and below the elbow joint, is prone to this reaction as well, but it seems to be not anywhere else on my body right now (maybe my neck/face on a very low level).

I finally began to question my reactions when a friend explained her daughter's whole-body pretty severe photo-sensitivity to me and I realized that my hives always happened when I either had direct sun exposure or was using my bright reading light at bedtime. When riding in the car last week, we turned a corner onto a freeway on-ramp and when the sun came through the windshield and hit my left arm, the entire arm turn bright red and got itchy instantly. By the time we got up onto the freeway, I already had developed about half a dozen tiny, whit blisters that were raw and bleeding. This was the fastest and most direct reaction to the sun I had ever experienced, and thankfully not how swiftly most of my reactions have progressed!

Faces

"You don't look sick."

"You look so good today! You must be feeling better."

How do I reply? Do I say, "Thank you!" and leave it at that, knowing someone is trying to encourage me?
Do I reply with the more honest, "Thank you for the compliment, but no, I'm really not feeling well at all." or "I wish I felt as good as I look then!"

One of the drawbacks of an "invisible illness" is that looks can be deceiving. As God told Samuel in l Samuel 16:7, "The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart.” What you can see isn't always reality.

Most people see the "face" of a healthy-looking me, the vast majority of the time. They cannot see that I live with a ticking time-bomb called XMRV that can land me hard down in bed with the smallest provocation, or sometimes for no apparent reason at all. They can't see that I'm one step away from walking past a balloon and landing in the hospital for a latex allergy like I did this week. They can't see that I struggle every day to get out of bed and try to lead as normal of a life as possible, despite immobilizing fatigue and every-changing levels and kinds and cycles of pain or cognitive dysfunction and a variety of other symptoms ranging from the annoying or distracting to the downright unmanageable.

So today I though I would show you two different faces of me, the one most people see, and the one that better reflects how I typically feel, the one you usually don't see because when I get to the point where my inward struggles manifest themselves so outwardly, I'm buried away inside the protective bubble of my own home (or in this case, the hospital). Here I am, sick in both pictures, but you would only know if from one.

Added to say, as to how I can reply to those comments, my friend, Lisa Copen, has put together a bunch of great ideas on her website:

Helpful list of latex products and latex-free alternatives: Directory of Latex Free, Non Medical Products - UK

Latex-free event planning and alternatives. Including tips such as, "Teachers that use balloons for in class pressure experiments can try inserting a rubber balloon inside of a clear 18" plastic balloon just before class.  This will allow most experiments to be conducted without other modification".

"A quick google search turned up over 200 schools in the US alone that banned latex for the 2006-07 school year.  While my googling turned up lawsuits on both sides of the issue (parents with children that have a latex allergy suing to force a ban and parents who sue over being saddled with the sometimes very high additional costs involved when a ban is put in place at their child's school), as entertainers we should expect these numbers to continue to grow on a year-over-year basis.  "

Non-latex balloons and ideas.

I love this sign!

My more recent article on When Balloons Are Scary is at http://givenmeathorn.blogspot.com/2015/10/when-balloons-are-scary.html.