Joel had his school's cross country run yesterday. He had loads of fun and really enjoyed the run. And he wished that it was held every month!
Though he did not win, he was among the top 20 and as a reward, I took him to eat his favourite food. Which is PIZZA, of course! The usual pizza joint that we frequent was located at the other side of the mall and the air in that area was 'soaked' with lacquer, fresh paint, spirit, glue and chemical fumes because of a huge renovation going on. Smells that would definitely trigger an anaphylactic shock for me. And it was only the both of us. Hubby had gone outstation for work. Definitely could not take any risks!
I have never been told 'NO' to consuming my own home-cooked meal at restaurants after I had explained to the manager/owner of my life-threatening sensitivities. And I always tell them that the food is 'halal' (which means no pork, because of Muslim patrons). But this pizza parlor would not allow it. Even after going into lengthy explanation. I seriously wanted to leave but decided against it as I had to go through the 'danger zone' to reach to the other outlet.
When Joel's pizza arrived, my brain started screaming loud sirens the moment the smell entered my nostrils. I quickly wore my masks. And the one-kind-vibes that were emanating from the people who worked there were palpable! I ignored the vibes and started to write this post. HAH!
My one-million-dollar question to all the people like me, who are mothers or fathers to young children is this: How do you handle outings with your family (who are normal and healthy with no sensitivities whatsoever)? How do you have meals with your families in the eateries out there?
Trust me, majority of Malaysians haven't the faintest clue what anaphylaxis, MCS, smell sensitivity or salicylate is. Some are not even aware of allergies! The general surgeon who performed an emergency appendectomy on me told me that it was ok to give me painkillers in small doses even though I had told him that I was allergic to painkillers! And when I woke up from the GA, struggling to breathe and with an accelerated heart-rate, the anesthetist told me that I was having side-effects from the GA which was manifesting in the form of nightmares and couldn't wait to kick me out of the post-operation waiting bay. She was irritated beyond words. And these are doctors!! What more the lay people.
I can hardly find even one dish in eating places in Malaysia that do not contain preservatives, flavorings, additives, colourings, and MSG. Even in organic shops, the sauces that they use contain salicylate. And many places serve overnight food. Outside food is definitely a big NO for me! And don't get me started on the smells!!!!! That will be another post.
Maybe I need to be 'friends' with owners who own 'non-smelly' eateries, who cook 'un-smelly' food and who only welcome 'smell-free' customers! I think such a place would only exist in space!
I have never in my life known a restaurant that would allow outside food and I have always been surprised when you write you do this. Maybe the USA is more money-oriented and strict? You can't even take drinks (like a water bottle) into any businesses that sell drinks. Restaurants are in business to make money. They want you to buy the food and they don't care what your excuses are. If you bring your own food into a restaurant, it sends a very bad message to the rest of their customers like "our food is so toxic, this woman might die from it." Same with wearing a mask in the restaurant. Not a good selling point! They want their customers to stay, feel relaxed and eat a lot.
ReplyDeleteYou are very, very BRAVE!!! to risk the consequences of going near a mall and going into a restaurant. I can't do either and I don't even react to food smells.
I'm not a mother or a father but I am a former teacher. My suggestion is have your husband take Joel to outside food places. That can be father-son bonding time. Every time you put yourself at risk for another attack so Joel can have his favorite food, doesn't it make Joel feel stressed and responsible? That can't be fun for him if in the back of his mind he's worried. Suppose you die on one of these outings? For the rest of his life he will blame himself. Let his father (or other relatives) do the toxic outings and you do non-toxic stuff with him.
You can't change society. You can only live within in the best you can. Not going to smelly places in public is just part of our hell. Not much we can do about it. Sorry!
I guess Malaysia has no capability of catering to people with allergies as they do not understand allergies/anaphylaxis. Besides sauces are almost in every dish. What more if I tell them I cannot SMELL cheese or vinegar without ending in an attack.
DeleteThe thing is hubby is not always around. Let's say we do not go to malls but to parks ONLY, there is still perfumes, shampoos and fragrances coming from the people who are there too. I can't avoid smells at all.
And how can I do my shopping if I don't go to malls?
What you say is sad but true that we can't change society. Thus, I am still finding my way to living the best that I can. Maybe I should buy those gas masks that soldiers use in chemical warfare??!!! Hehehehehe... I think the mall would throw me out! HAHA!
I actually bought a fancy, very expensive respirator once and unfortunately it was made of a plastic that offgassed fumes. I've heard they do have some that are made more hypogenically, but I don't know.
DeleteI moved away from people to survive. I know not everyone can do that. It's really difficult living in a populated area where there is little chance of finding an area with no people.
Does Malaysia have farmers' markets for grocery shopping? Can you shop online and have things delivered? I have found I can shop in individual stores not in malls, but I do go during slow shopping times. Needless to say, I don't buy much anymore!
Do you have friends with their own kids who you would trust to take Joel for some fun? Or your relatives?
Can you imagine me walking around with a respirator??!! ROFLMAO! Even with a mask I get rude stares! Imagine a respirator!!!!!! HAHAHA!!
DeleteWell, it is difficult for me as I am a mother to a 7-year-old boy. He needs clothes, stuff and he is a normal child who needs a normal lifestyle. I am still learning how to juggle with my health and him being normal. Not easy.
Online shopping here is not very widespread. Besides, I don't know how honest the business people are. They might send not so fresh stuff or spoilt good. A very famous organic shop has just closed down its last branch recently.
I've seen how people change expiry dates and sell stuff with way past expiration dates! So it is still the best to buy stuff in person.
Joel does not trust anybody to take him. He sticks to my husband and I like GLUE ever since I almost died. He won't even stick to my parents!!! Not even my parents!!! Imagine that! It'll take time.
*spoilt goods, I mean
DeleteYep, I understand about not wanting to order away for food and I've heard all kinds of stuff about creepy grocery people doing all kinds of stuff in order to sell things. And most of what I've heard is about food in the store, not from online sources! I don't think we are ever truly safe no matter how we get the food. It's all about money. There are no markets in Malaysia? For some reason, I always picture markets with farmers coming in from the country to make money in the city? If so, get to know these people. There must be some out there who don't put chemicals on the produce because they can't afford the chemicals?
DeleteI think it would be very difficult to have a child and be chemically/salicylate sensitive and want to give them a "normal" life. But really, what is NORMAL? Who is defining "normal"? Is normal based on your notions of what life should be based on your former life before you became sensitive?
He's only seven years old. You are in control of what he perceives as normal. If he were a teenager you might have a more difficult time, but he hasn't even developed his mature identity yet. You can influence his life greatly without expecting him to define his needs as normal. Does he need to think pizza is his favorite food? Does he need a lot of clothes and stuff? Lifestyle changes are difficult, but do we really need to be buying as much as we do? And what do we really NEED to buy vs. WANT to buy.
When someone in the family ends up with life-changing health issues, lifestyles need to be reexamined. Your husband is gone a lot? Maybe he needs a different job? I take it he travels a lot? Maybe you all need to move? Some place less hazy, crowded and toxic?
I know these lifestyle changes are often unthinkable, but your life is on the line. Your posts clearly send the message it's a matter of life or death. That's serious.
I know in my earlier post I said I wasn't a parent, but more important, my mother died when I was little. You don't want that to happen to Joel and you definitely don't want it to happen because you were doing something to make his life seem more normal because he will suffer the guilt. I know I didn't cause my mother's death, but as a child I had guilt anyway. I can't imagine what it would have been like to know she died doing something for me.
Maybe Joel is untrusting of anyone taking him because he doesn't want to leave your side? He's been watching you for years now sit in restaurants, go to malls, and expose yourself to things you shouldn't. Maybe he doesn't trust you to make good decisions? He can't leave your side because he needs to try to protect you if you won't protect yourself?
I read one of your blog followings "Maybe It's Just Stress" the one about Christmas presents. The woman was stressing about not having money for presents because giving lots of presents was her "normal" and by not being normal she was thinking she was a bad parent. The kids didn't care! They adjusted and had just as much fun. Kids are very flexible with life, especially the little ones. It's the adults that have a harder time bending the rules of life and their perception of how it should be vs. accepting how it is.
Your family life is anything but normal and there isn't much you can do about it. Don't stress out about being normal all the time. I doubt if Joel cares. He just wants you to live.
You haven't been responding to my emails so I'm wondering if you are getting them?
What e-mails?????? Will go look in the spam folder.
DeleteYes, there are markets in malaysia. Lots of them. Wet market, farmers' market, night market.
DeleteI am so sorry to hear that. I have found many people simply do not understand. I have been suffering terribly. Lots of throat swelling and asthma symptoms as hay fever season hit hard here in NY this week. I missed three days of work and do not want to go back as we work across from a forest and there is no air conditioning. They keep all of the windows open and I suffered terribly by the end of the two days I went in. I have been put back on prednisone again and can barely eat anything. My boss and even my allergist do not understand why I want to take a medical leave until this passes. My ALLERGIST for goodness sake! She also told me, "Oh, your throat won't close from environmental allergies." Yeah, right. How in the world could she say something like that. I live on zyrtec d, benadryl, inhalers, prednisone and now meds for heartburn because the prednisone is tearing up my stomach....I know you are one of the few people who truly understand. I am sorry if I am unburdening myself here...I have been fighting depression as a result of not being able to work. I also worry, as a single mother about being alone with my daughter. I have friends on alert who said they would help, taughter her how to use the epi-pen...and that is the best I can do. Please give me something positive to get me through this. I am just exhausted!!! Love and blessings of health to you, Cyndy
ReplyDeleteHi Cyndy!
DeleteNot all allergists know what they are talking about. A dermatologist that I saw regarding flea bites which caused me hell, pain and misery for 1 year threw the paper on the table (regarding my allergy background) without even looking at it and said that she does not need to read it as she knows what allergy is about and that when I said that I have eczema, there is nothing else she should be reading about! Talk about being stupid, dense and arrogant! That was the first and last time I went back to see her.
Yes, prednisolone causes stomach problems. Steroids not only cause havoc for the stomach, also the skin and it made me a monster! My lips cracked until they bleed and I was so swollen from the steroids! I took Controlloc to ease the gastric/hertburns/reflux.
Just rest more and know that there are people rooting for you. Take one day at a time and things WILL get better, even though it is bit by bit.
Lots of love and hugs!!!!! You can do it.
Thank you, Evelyn. I need to hear that it gets better. I am going to try accupuncture beginning next week...One time each week. I went once on Saturday. The hardest thing for me has been the foods. The food allergies are at a high right now. I need to do food rotation and that is a lot of work. Meaning, I can't eat the same food over and over, I have to change each day. With so few I can eat, this is difficult. I am okay with a few grains, chicken, and turkey. Today, I am trying pork. I did not have a problem with it this week, so should be okay. I can only eat lettuce but am afraid if I eat it too frequently, I will get a reaction. I had to take off this week to rest and let my lungs heal and also to limit exposure to the pollen that comes into the school. They have open windows, no air conditioning and never close them. The students will go wild...especially when it's hot. Anyway, I am trying not to be filled with fear at every bit I take. I'm losing a lot of weight, too. I just hope I don't lose too much and get even more weak and sickly. Keep routing for me...as I'm routing for you. Wish we could talk more. I know you have been here and understand. Lots of good wishes of peace and health, Cyndy
DeleteIf you can take these veggies, celery and cabbage are salicylate-free too.
DeleteI lost so much weight back then that I was lighter and skinnier when I was in my twenties! Don't worry, you'll put back once your body adjusts and when you start eating more.
Take care and stay safe and strong! :)