Been thinking about this since the other day’s
discussion in a group to which I belong. Thought I would try to make
some sense of it all to myself and see what you all think.
Background:
I have anaphylactic reactions to airborne wheat and corn
(and corn derivatives). I have reactions
spanning from not much to hives to swelling, migraines, numbness, cognitive
problems, and so on to other types of exposures and to multiple other
substances. Therefore, I am grain-free
and avoid lots of other substances/foods.
I am not the most sensitive of people, unless we are talking airborne,
and then I might be considered sensitive.
To date, IF I avoid the other allergens as much as possible, I have been
able to not have to compound my medications.
I can usually SMELL when something is going to be bad for me –
not-safe-for-me items make it feel like I have spider webs drawing through my
head (like walking through one in the forest).
Situation:
I can eat Raspberries.
I have local farmers who have u-pick farms and who are at the farmer’s
market. These are, at least were until
Monday, were safe-for-me. I was at a
local grocery store which was having an AWESOME sale on raspberries. I sniffed them and they “smelled good”. So, I got a pack, and carefully separated the
top berries from the ones touching the soaker pad (which is most always
not-safe). I ate FIVE berries. This was about 2:00 PM. (Note to new people – just because THIS item
is safe from THIS source, does not mean that THIS item is safe from THAT
source).
The first one did not taste as good as it should have. The next one was a bit less luscious than the
first. By berry 5 my tongue was numb, my
lips were starting to swell a little, my inner cheeks were swelling a bit. Please note, my throat WAS NOT swelling. Also, my fingers where I had touched the
berries were bright red and tingly.
Reaction started about 2:05 PM.
I immediately took quercetin and benedryl at doses approved
for me by my allergist. I dropped 1
epipen into my pocket and put the other on the table. I notified my son, who is 18 and was getting
ready to head out, that I needed him to stay in-house as I was reacting. Were he not available, I would have notified
one of my neighbors. If no one was
available, I would have headed to ER by ambulance as I did not know how far
this reaction would go.
I continued to monitor the situation, reporting at 15 minute
intervals to my son, who had also notified my parents and who then reported to
them as needed. The swelling remained
minor. My inside mouth tissues felt
sunburned and hurt, but my throat did not swell. I was able to continue to think, although my
emotions were all over the place. I
could breathe without difficulty. My
blood pressure went rather high (a typical allergic reaction for me).
I did a nebulizer treatment to
ensure that my lungs had as much support as possible (30 minutes into
reaction). I continued to alternate
quercetin (odd hours) and benedryl (even hours) through the evening. By hour 4, my blood pressure was
180/140. By midnight, my blood pressure
was 220/170. By 3 AM (the next morning),
blood pressure had dropped back to 180/130.
By 5 AM, it was down to 160/110.
Asthma started to kick in about 10
PM that night. I started to do nebulizer
treatments every 6 hours. The asthma was
very mild compared to other reactions.
So – thoughts on all this.
The reaction was triggered by the
berries, something on the berries, or something else. It was a specific item making my body have a
specific reaction. Medication was needed
to control the reaction and to support my body as it went through the
reaction. Without the medication, the
reaction would have been MUCH worse.
And to be clear, this WAS a mild
anaphylactic reaction – if I had not had multiple anaphylactic reactions and if
I had not KNOWN the local ER would increase my exposure to allergens, I would
have been in the ER. If it had been just
a little worse, I would have been in the ER.
If people had not been available to stay with me, I would have been in
the ER.
So, how does wellness come into
play?
Well, I believe that a body is a
system. I believe there is complex
interplay between all the factors and domains of our life. Things that had increased my risk of reaction
included the high pollen count (see full bucket theory a little bit further
down), a previous fairly serious reaction about 10 days prior, lack of sleep
the 3 or 4 nights before Monday, and stress over loss of job/having to fight
the loss of job. These all had taxed my
body and reduced the amount of available resources to cope with the reaction.
What reduced my risk of
reactions? I avoid as much as I possibly
can within my own home. Most of my food
is safe-for-me (of course, as illustrated I can make some really boneheaded
choices on food as well)!! I have a
basic safe-to-eat diet for when reacting in order to reduce rebound
reactions. I meditate 15 minutes 2 x
each day. I have a wonderful support
system. I have a good medical support
team – so I know I can handle situations.
Side-note – Bucket Theory.
I seem to be a bucket type of
person. Think of an empty bucket – each
allergen exposure is a “drop” or perhaps a LOT of drops, into the bucket. The fuller the bucket gets, the less space
there is for more allergens. Eventually,
the bucket fills up. The NEXT exposure,
no matter how little or how much, is the one that tips the bucket over. And that is the one that I experience as a
HUGE reaction.
How does the bucket relate?
So, the environmental pollens were
drops. The medications I take daily are
drops. The raspberries – for whatever
reason, were the exposure which overflowed the bucket. What I do not know at this point is if
raspberries are a flood of exposure (like airborne wheat) which is going to
overflow the bucket every time, if it was just THOSE raspberries, or if it was
a contaminant on those raspberries. I
guarantee I will trial my were-safe-for-me raspberries VERY, VERY carefully the
next time I eat them… which will be a while!
Side-note 2 – Moving Target
For me, my reactions are like a
moving target. I seem to randomly
develop new allergens (most recent ones are cloves (asthma, migraine) and black
pepper (ana to airborne). I also do not
have replicable reactions for the more mild of my allergens – I might
immediately start vomiting on day, develop hives another day, or have an asthma
attack the third. Airborne wheat is
ALWAYS an ana reaction involving lungs and swelling of throat/mouth. Airborne corn usually is like wheat, but on a
really empty bucket, I can get away with a blinding (literally shuts down my
vision) 2 day migraine. Airborne corn
derivatives vary.
How does the moving target relate?
So, it is very hard to say if I am
exposed to this thing then this specific reaction will occur. That makes it hard to plan around things – so
I have learned to plan for about the worst 75% of the time reactions. This seems to work best for me. It also helps to paint a picture for my
friends and family that the reactions are not always spectacularly visible, but
that the chance of a bad reaction is always there. We sometimes joke – “Do you feel lucky,
punk? Well do you?”….
Ok, so what about wellness?
I think that the more you can do
to help your body be healthy all contributes to emptying the bucket. The meditation I do each day has shown that
it reduces my blood pressure… I
meditated during the reaction, which I do believe kept my blood pressure from
going higher. It would drop my blood
pressure 10-20 points on top and 10 on bottom each time I did 15 minutes. But, I am not good enough to meditate for
hours.
If I had not been as worn out physically and
emotionally, it may be that the reaction would not have been as much – NOTE –
this does not mean the reaction would not have happened.
The things I had done to be
healthy, I believe supported my body through the reaction, and hopefully
reduced the intensity of the reaction.
Being aware of what was happening and being able to cognitively talk
myself through it (and know what to expect in a broad sense) allowed me to
remain calm. I think remaining calm made
it so anxiety neurochemicals and physical reactions did not intensify or the
reaction by further taxing my body (in other words, so my body could put all
energy to fighting the reaction). A lot
of the way I think about my body is derived from dynamic systems theory, a
rudimentary understanding of/interest in neuroscience, and various other
concepts.
So, I rather consider wellness
practices – whatever ones work for you – to be under the heading of things to
increase physical resiliency. These are
things that can help you keep your bucket emptier – provided you do the
structural work of avoiding allergens in all ways possible! Wellness practices do not, at least in my
opinion, take the place of medication, medical protocols/advice, and avoidance
of allergens. Wellness practices do
provide one more tool in the fight to maintain the quality of life you want to
maintain.
To summarize, my allergy life plan
looks rather like this –
1.
AVOID
EXPOSURE TO ALL THAT CAN BE AVOIDED
2.
Keep medications on hand and work with your
medical team.
3.
Make sure support groups are informed
4.
Increase wellness in all ways possible
(eustress)
5.
Reduce negative stress (distress) in all ways
possible.
6.
Plan that there will be reactions – and know
what to do in each type/situation
7.
Don’t make impulsive decisions (I blew that one
this time!!)
8.
Stay current on the research and information –
science is still in the middle ages when it comes to the whole of the human
body.
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