Fight or Flight

This week has turned out to be rather a busy one.

I been spending quite a bit of time sorting through VHS video’s, setting aside home videos, and packing purchased tapes in boxes. Yesterday was spent first calling the local Women’s Shelter, who didn’t need or want our old Sony CRT television and the VHS tapes, then calling further afield until I found a Homeless Shelter in the a nearby city where their current CRT television was fading, soon to be discarded. They would gladly take the Sony unit, and perhaps the videos. I arranged with the staff to drop the items off after 5 p.m., which gave Attila and I plenty of time to prepare the items, and make the 45 minute trip the city.

It was a lovely drive, sunny, bright, with a few remaining blazes of autumn colour along the road. It turned out that the Homeless Shelter wanted the television, but not the VHS tapes. I had a list of other shelters in the city that might want them, but first we followed the suggestion of the staff member of the Homeless Shelter, to take them to the Salvation Army Thrift Store. It wasn’t far out of our way, so off we went, and sure enough the woman at the Thrift Store was very happy to receive the VHS tapes, there were over 100 of them, all in good condition. The prices in that store are very low, they could be easily purchased by someone with a very low income, we were happy to leave them there.

On Monday the telephone rang, which it rarely does, so much so that I have to pause to figure out what electronic device is making the noise. It was The Heart Clinic, they had an opening for the Persantine MPI Nuclear Stress Test, the first of the three heart tests I am to take. The other two will be scheduled when I attend the first test, for the New Year I was told. The test will take all day Friday, so there is a bit of time to prepare, no caffeine, no Tylenol, and no breakfast on the day of the test. Not too complicated.

And today I will attend my appointment at The Heart Clinic. I didn’t sleep well last night, and neither did Attila. We both awoke in cold sweats. We are both frightened. I will be injected today, and if someone makes a mistake I will die today. I know this every time I enter a building where I will receive medication by mouth or injection. I don’t know what the people I will be dealing with will be like. They may be wonderful. They may not be wonderful. Someone may be having a bad day, may regard my issue as a form of attention seeking, or have some other personal reason for not catching, or deliberately ignoring, my allergen in a medication or injection. Sadly I have run into slipshod medicine before, faced possible death in what are benign circumstances for almost everyone else. So the fear is real, for both Attila and I. We had a rough night. We said a very affectionate goodbye this morning as Attila left for work.

I will be in fight or flight mode today, ready to become insistent, and if that doesn’t work, obstinate. I have yet to attend a specialized facility that is prepared to deal with my issue, it seems it is very rare. If I am very lucky, they will respectfully listen to me as a partner in health care, and the issue will be dealt with smoothly and pleasantly, that happens occasionally, as it did with the orthopaedic surgeon. More likely and more often though, the health care professional will try to dismiss the issue, usually saying something like “have you had this shot before, then it should be OK” (e.g. flu shot), as if that had any relevance at all to the current ingredients used in a medication. When I get that kind of response I know they aren’t listening to what I am telling them, and then I feel frightened. Ingredients have to be checked every single time, for as I discovered with food, ingredients can suddenly change, without warning. All this careful checking is tedious, it disrupts the work flow, it is annoying, as I well know, but it has to be done.

Today I have to be brave, remain calm, face possible and likely unpleasantness, and the small but real possibility of a sudden death ending to my story.

Am I being dramatic. Of course, this is a dramatic situation, and it calls for an honest approach.

I remember reading the blog of one young woman who had anaphylaxis. She was preachy and had all kinds of advice, along the line of just smile, educate people, don’t make your problem their problem. Her parents had always run the canon fodder line for her condition, and now she was cheerfully and confidently giving out advice as she entered the fray. Her blog lasted about eight months before being abandoned. I check every once in a while to see how she is doing, and she has not returned, it has been two years. I hope it is because she discovered the easy way that it just isn’t that simple, that it is soul wearying to live each day this way. I hope it is not because she learned the hard way that it is better to be unpleasantly obstinate, to make your problem their problem if they are feeding, or injecting you, than to give in to insistent bad advice from a medical professional.

I am not afraid of possible pain today, that comes and goes. I am not afraid of results, because usually those can be handled even if they are not good.

I will be glad to write a final note here tonight, telling you, and the future me, that I made it through the day unscathed. I expect to. I expect to do everything in my power to ensure my own safety, and I expect to succeed.

Attila and I, and before that my kids and I, go through this every single time I need medical treatment from strangers, this is not a one-off situation. I don’t tell my kids about my appointments anymore, I spare them that, Attila has my back now.

3:05 p.m.

I am home safe and sound.  They were wonderful people, they worked with me, we did the treadmill instead of the injections that mimic a treadmill.  Thanks to everyone for such wonderful good wishes!!!!

Worldly Distractions

Weather

6°C
Date: 7:00 AM EST Friday 11 November 2016
Condition: Mostly Cloudy
Pressure: 100.8 kPa
Tendency: Rising
Temperature: 5.7°C
Dew point: -1.5°C
Humidity: 60%
Wind: NNW 32 gust 43 km/h
Visibility: 24 km

Quote

“Courage is being scared to death – but saddling up anyway.”
John Wayne
1907 – 1979

Attila Eats With Me

It seems in the last post, and in this post, I am trying to reorient myself to reality.

As always, when I spend a great deal of time dealing with issues far from the cocoon of safety Attila and I call home, disorientation can develop. The summer has been eventful and stressful, with the arrival of preemie Grandbabies (who survived nicely and are now thriving), a few stressful family interactions that were happily resolved, and the sudden loss of my brother.

Today I am thinking once again about the impact that anaphylaxis has had on my life. My thoughts are triggered by an article in a magazine that focuses on young people with allergies and anaphylaxis. I keep hoping to see something of real value in the missives I get from them, but nothing so far has addressed the issues that dominate my experiences.

Most of the supportive focus on anaphylaxis, that I have been able to find, has centred around children, particularly children allergic to peanuts. Frightened parents formed lobby groups, and organizations sprang up to support their efforts, research programs were created.

From time to time over the many years I have had my allergy, I have sought support from organizations. Unfortunately my particular allergy is relatively rare, and many people died during their first episode, there aren’t many of us around, at least in my age cohort, not enough to form a lobby group. When I approached allergy organizations for support, I was instead asked to volunteer to support them, I suppose because I was an adult and most of the adults they interact with are the parents of children afflicted with anaphylaxis. At the time, these experiences were bitterly upsetting, I asked for support because I needed it.

My point has always been that I am living the life that the allergic children will eventually grow up to experience. The parents, and the organizations that developed to support them, failed to recognize the opportunity to explore and support people dealing with anaphylaxis in their adult years. The only thing the contacted organizations thought I was good for was stuffing envelopes as a volunteer, or donating money to them. I always felt the parents who dominated the politic of the support organizations were short sighted.

“I was lucky to grow up with a strong parental support system that allowed me to go about my childhood virtually worry free – mainly because my mom worried enough for the both of us. She even made sure that I met with the campus dietitian at Tufts University when I started college to talk about food on campus, so that I could feel safe when eating in dining halls.

Despite all of (or possibly because of) what my mom has done for me, I have been disturbingly careless when it comes to my allergies.”
Allergic Living

I can tell this fellow’s Mom that it isn’t going to get any easier for her son. The general reaction to the restrictions of anaphylaxis are rather hostile. This hostility is something the parents of children with anaphylaxis deal with, and has been demonstrated by rabidly angry parents who could not send peanut butter to school with their children, because it could kill some of the other children. Adults however, are on their own when it comes to dealing with the restrictions of and reactions to anaphylaxis. At the positive end of the social reality, there are those who care deeply and make incredible efforts to ensure safety and inclusion in meals and events. Social life goes rapidly downhill from that point on.

The fear of killing you really affects decent people. Simple things become land mines of social tension. Say a visiting salesman at the office brings in a box of donuts as a treat for the staff, he notices that you don’t take one, he urges you to go ahead, then feels bad because you can’t eat any of them, and the rest of the staff feel bad eating them in front of you. This is not a relaxed situation, nor is it any fun for anyone. If you have anaphylaxis EVERY situation that involves food and/or beverages in a social setting is tainted. New situations are particularly difficult in this way, some situations improve dramatically over time as people become accustomed to the condition. Being “special” in this way, receiving this kind of attention, at every turn, even when it is warm and positive, is wearisome. I have been doing it for decades, as an adult.

My nuclear family offer Attila and I some opportunity to enjoy a warm and safe environment for social interaction. They have given up inviting us to many of the family events they enjoy, such as touring wineries, because we always decline. Social events that focus on substances that can end my life are not enjoyable, not to mention the possibility of coming into contact with my allergen in an environment where it is in active use. I don’t drink alcohol at venues where foods or beverages may contain my allergen, because I might relax, I might nibble on some tempting little delight, and then I might ruin the party, I might die. Attila and I strive to find events where the price does not include dangerous (all) food or beverages, and the focus is on a shared interest such as live music. The best events for us are those where we can bring our own food and beverage, and other’s do the same; at those events there is no social tension generated by my anaphylaxis, and I can attain that rare experience of going with the flow of the human activity around me. I remember that relaxed and flowing experience, my allergy was suddenly acquired at the age of 33, when I had my first bout with anaphylactic shock.

I wish the young man in the article good luck, if he seeks independence he is going to find out just how much work his Mom has put into protecting him from the responsibility of surviving.

There is hidden depth to the statement, “Attila eats with me.”

Worldly Distractions

Weather

16°C
Date: 9:00 AM EDT Friday 2 September 2016
Condition: Mainly Sunny
Pressure: 102.3 kPa
Tendency: rising
Visibility: 24 km
Temperature: 16.2°C
Dewpoint: 10.4°C
Humidity: 68%
Wind: NNE 21 km/h

Quote

“Where people wish to attach, they should always be ignorant. To come with a well−informed mind is to come with an inability of administering to the vanity of others, which a sensible person would always wish to avoid.”
Jane Austen
1775-1817

“Always be ready to speak your mind and a base man will avoid you.”
William Blake
1757 – 1827

Baker’s Yeast

Occasionally, just occasionally, I become aware of how restricted my life has really become. Sure, intellectually I know it is restricted, and as a rule I just get on with things. But I seldom feel it. I seldom know it in my bones, in my cells.

My allergy is a game changer. It reaches into every single aspect of my existence. Every bite that I eat, every sip that I take, every pill that I pop, or injection that I allow, may put my life at risk, or even worse, cause brain damage.

This morning Attila and I discussed preparing a dish that we both love, on the weekend (which is one day, Sunday, at our house). One of the ingredients we will need is baker’s yeast. Luckily we have enough to prepare the dish, but it is the last of our supply.

I use either Fermipan or SAF baker’s yeast. These yeasts are not easy to find. The last time I drove eight hours to and from the flour mill, I bought four, one pound packages, and kept them in the freezer. They lasted for years! But now we are running out. The drive to the flour mill is daunting, and expensive. Shipping might be cheaper than travelling to shop in person. I looked at their web site, and they do not ship yeast.

I spent the whole of the afternoon searching for a place to buy that yeast. I found retailers in Canada who wanted more for shipping that the yeast was worth. I found retailers who would ship it from the USA for more than the yeast was worth. I did not find a retail outlet near the country house, or the little house in the city, where I might easily drive to pick up the yeast myself.

At last though, in one of the food forums I scoured, someone suggested an online retailer in Toronto who sells this baker’s yeast.

I called the retailer, and found that their shipping charges were quite reasonable. They have a flat rate shipping charge, so it was in my best interest to purchase all of the items I thought I might need from them at one go.

The retailer was keen to check with their manufacturers, to ensure that the items on my list were allergen free. We corresponded by email through the afternoon, until we had determined which items on my list were safe, and which items were not. I was just sending off my order, and payment, when Attila arrived home from work. The items should arrive in the next week or so. I was exhausted; this type of activity requires great care.

All of that effort, to purchase baker’s yeast, and one other baking ingredient, the rest were unsafe. A great deal of my time is spent trying to find food that will not harm me. It is getting harder and harder, as more and more manufacturers use preservatives to extend the shelf life of food, to increase profits.

Honestly, I think people with anaphylaxis should be eligible for disability pensions with a food/medication allowance, to allow them adequate time and resources to find safe, affordable food to eat, beverages to drink, and medications to take. So many day-to-day decisions are of life-or-death gravity for a person with anaphylaxis. That could only happen in a kinder, gentler society than the one I live in.

Luckily Attila is on my side. He is respectful of the danger I face, and diligent in screening every bit of food/beverage/medication that comes in the door, to ensure that it is safe. I am not easy to live with, but Attila thinks I am worth it.

One year ago today at Luna’s house. Uncle Lares with his niece Tink, and nephew Elf, at the dining room table, working together on a Lego construction kit. Elf is fascinated with building things!
Larestinkelf

Worldly Distractions

Weather

6°C
Date: 9:00 PM EDT Thursday 23 October 2014
Condition: Clear
Pressure: 101.9 kPa
Visibility: 16 km
Temperature: 6.1°C
Dewpoint: 4.5°C
Humidity: 90%
Wind: NW 8 km/h

Quote

“Life is like a game of cards. The hand that is dealt you is determinism; the way you play it is free will.”
Jawaharlal Nehru
1889 – 1964

Curiosity

During this visit to the little house in the city, I have had, for the first time in a very long time, the opportunity to explore some interesting social groupings in my immediate surroundings. The little house is located near two larger cities, both about a thirty minute drive from the house, on good roads. That means that exploration is affordable and accessible, at least while I have a car at my disposal. It is not the same as being in a city like Toronto, with a public transit system, which allows people mobility without a vehicle, and which I consider to be an ideal and unattainable place to exist.

Yesterday I attended a religious meeting, where tolerance of all beliefs is professed. It was interesting. People were friendly. There were happy children present. I was welcomed warmly and asked if I would introduce myself, to which I agreed, wrongly assuming that the leader would mention my presence. To my surprise, as the meeting got started, I was handed a microphone with which to introduce myself, which I did, as gracefully as I could. There was a speaker who outlined many of his achievements with great pride, and considerable detail in outlining his personal successes. He said that he had made a positive difference in many people’s lives. There was a reasonably priced, very healthy meal offered at the end of the meeting, to be followed by a discussion.

My experience was generally good. There were a few things that made me uncomfortable, and they are things that I find significant.

One was the speaker, who had accomplished much, and spoke of nothing else. During the question period he offered close-ended answers to questions from the assembly, and to my question about the structure of the organization, after the meeting by his pamphlet display table. I always hope for genuine engagement, in those who advocate for others.

I was asked three times, by different people, “What do you do”? I tried different answers with each person (I have held many positions in my life), and did not feel good about any of the interactions. Perhaps I was being exposed to a particular element in the assembly, I don’t know. It is a minus in my book, to be asked, “what do you do”? It is a question I do not ask of others, because I would like to get to know them without the clutter of outer world achievements.

The meal ended up being another awkward experience for me, which was not unique to this group. I was invited to join in the meal by many smiling people. Breaking bread together is a wonderful community activity. It is not something I can participate in, with my disability, anaphylaxis. People seem to be taken aback by the condition. This is always an awkward issue when amongst strangers; which wears away with time and exposure.

Last but not least, I was approached for a donation, the basket held out in front of me, held by a man with an unsmiling face, many eyes upon me, until I gently shook my head no. Had I been discreetly asked, upon entry, for a fee to attend the meeting, I probably would have complied.

The leader of the group told me that every meeting is different, so several visits would help me to get a feel for the group. When I found her, to say goodbye and thank her for welcoming me, she gave me a hug.

Just Hanging Out: Branches on the tree in the back yard on a rainy October day.
DSCF3634 branches ash

corporate landfill

used cardboard
the air-filled gleaming display
when my contents
had value
to the process

unwrapped
no shiny sparkle diamond
tiara gone
just me
not the process

unfettered

can you see me?

by Maggie Turner, 2013

Worldly Distractions

Weather

15°C
Date: 11:24 AM EDT Monday 7 October 2013
Condition: Light Rain shower
Pressure: 100.4 kPa
Tendency: rising
Visibility: 6 km
Temperature: 15.2°C
Dewpoint: 14.6°C
Humidity: 96%
Wind: WSW 16 km/h

Quote

“We confide in our strength, without boasting of it; we respect that of others, without fearing it.”
Thomas Jefferson
1743 – 1826

Anaphylaxis

Anaphylaxis is a life changing condition, a powerful force in one’s life that is invisible to others.

You will find my allergen in a high percentage of food available in the grocery stores, could be anywhere in restaurants, but medicines are the real terror as they are not required to list non-medicinal ingredients and usually don’t. I’ve held up operating rooms while they searched for complete ingredient lists for anaesthetics because they failed to prepare for my medical care. I always provide complete information when I am interacting with doctors, nurses and hospital staff, so they know ahead of time about the allergy and can prepare. Dentists have been particularly indifferent to the allergy, which has been very dangerous because most freezing injections have sulfites in them; not all, but most. I’ve faced my own death a few times in the dentist’s chair. I’ve also come out of anaesthetic after surgery and been denied painkillers because no one prepared for my medical care… really resented that one a lot and felt it deeply, as did Attila who stayed by my side and watched me suffer. When I go into hospital I write allergen warnings on my body with permanent markers and wear a self-administered allergen warning label on my forehead because I might not be conscious to protect myself from negligence. I’ve had a few close calls.

Hospital emergency care will not allow an advocate to accompany me while I receive health care. I tried to find a way to permit an advocate to accompany me when I receive care in hospital, contacted all kinds of health care associations etc., but have come away without any answers. After running around in circles for a few years trying to put something in place so that I needn’t feel terror about medical care, I gave up trying. I am but one person and my dilemma is of no interest to anyone but me and a few others who are seriously affected by this allergen. What I really need is legal right to have an advocate with me at all times when receiving medical care, so that if I am not functioning at 100% someone else is looking out for me and protecting my life. As it is, I fear for my life every time I enter a hospital as a patient.

Socially isolating and very tiring.