31 Aug

The Struggle is Real

You decide to go kayaking, get to the place, and go to put on sunscreen, then realize one BIG THING – ingredients. You read the ingredients only to find that the sunscreen has glycerin in it, and you find nowhere on the package the words “vegan” or “vegetable based products” or “vegetable glycerin”.

Glycerin is not always vegetable based, so if the product does not say, you do not know. You have to make a decision to take the risk of a reaction later that day for using the product, or you take the risk of being burned. What would you do? What have you done in a similar situation?

I took the burn that day. I had a long sleeve swim shirt and a huge garden hat, so I knew I had upper body protection, but I had nothing for my legs. An hour in I remembered my towel in the dry bag, got it out and used it for the remaining hours we were on the water floating down the river. I thought I may have caught the “burn” in time, but each time I took the towel off my legs were revealing the hour of sun they had gotten. By the end of the day, I had red thighs, very red thighs! It could have been worse, but I was able to cover well and keep from bad burns. If I had not had a long sleeve shirt and a big hat and towel to cover, I would have had to stay behind and not go on the river, take the other risk of a bad allergic reaction later, or just let myself get burned badly and live with weeks of pain. (What I got was bad enough)

I now have non-mammal sunscreens and skin products. I found out about glycerin being animal based when I had a reaction to massage cream not long ago, and it has caused me to look at everything I use, and change it if needed.

The struggle with food allergies, especially Alpha-gal mammal allergy, is real, folks. We have to make decisions all the time that can alter little things in an entire plan. We have to cook separate meals for ourselves, take our food and drinks everywhere, ask people to change their food choices, and so the list goes on.

Here is another situation I have been in many times:

We go out to eat on occasion. On the day we went kayaking (story above), we had been on the water longer than expected, getting off the water and able to leave about 5 p.m. We were hungry so we went to a place to eat. I will name the place because they are taking many strides to make it easy for allergy people to enjoy eating out without too much struggle, Ruby Tuesday. I ordered the Turkey burger and of course had to ask for no cheese and no dairy dressing, and that it be cooked on a grill not being used by anything else. They had trained the staff and were prepared with a special “allergy” grill. YES! you read that right. They have a special allergy grill and pans, and they are cleaned after each use and used only for allergy people’s food. The asking was a struggle and I hated it, but the fact that they had a plan for me already in place helped me to get through it. Not every place is like this, however. THE STRUGGLE IS REAL FOLKS.

Eating out, cooking at home, buying makeup or other skin products, using sunscreen, buying soap and shampoo – and the list is long, friends – is just not what it used to be for us allergy people.

We have to make the best of it however. I am posting all I can with resources and links to help you all live in this “phase”. I am also on a mission to find a way out of this. I am on a journey just like you. I would like to encourage all who have no allergies to have patience; it is a struggle for you all also, I know both sides now. I will do another post for those with the struggle to live with and interact with food allergy people when they have none. The frustration and struggle is real on both sides of the spectrum.

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