- I'm a glass-half-full type of girl. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010 and life-altering allergies in 2013. I believe having a positive attitude is the only way to live with dis-ease. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Dis-ease is expensive, so I live a frugal yet healthy lifestyle. This is just my blog; my day-to-day story.
Friday, July 5, 2013
A day in the life of a type 1 diabetic celiac with life-altering allergies.
Do you ever look at the people around you and wonder what their story is? How people (like us) can look so normal and healthy on the outside that most people would never question or guess there was anything wrong with us. I have heard this statement so many times, “Wow, you LOOK so healthy; I never would have guessed that you have XXX (fill in the blank here- spinal cord injury/diabetes/celiac disease/autoimmune thyroid disease/life-altering allergies)." I am amazed myself that I can make it look so easy to others that they don't know I have multiple diseases. It's a skill.
So what’s it like to be a type 1 diabetic/celiac with life-altering allergies? It’s a very analytical lifestyle. If you are a diabetic, you are analyzing carbs and blood sugar trends. If you are celiac, you are analyzing menus, ingredients, cross-contamination risks. If you are a person with severe allergies, you are analyzing your environment, ingredients, etc. If you are all of these, like me, you are analyzing EVERYTHING.
Having severe allergies to all detergents (in bath soaps, shampoos/conditioners, household cleaners, hair products, laundry products, makeup, sunscreen, deodrant, eye drops, self tanners), many adhesives and all antibiotic ointments, and carba-mix which is rubber (think rubber gripped pens, soles of shoes, spatulas, all rubber gloves, cell phone bumpers, rubber bands, hoses, certain ear phone cords, erasers, cavity fillings, just to name a few) has dramatically altered my life. I also have diagnosed allergies to dairy and raw onion, although these are mild on the allergy scale and I can sometimes still eat them without consequences as long it is not an everyday thing.
I’ve talked a lot on my blog about diabetes and celiac disease, and some of the challenges I face having BOTH of these diseases (that do not place nice together). But today I’d like to talk a little about how having severe allergies to things affects my life. It’s going to be a story, in pictures.
Let’s begin with what I am allergic to: (click on any picture to enlarge)
It's every month going to the special website you've been assigned to go to by your dermatologist and printing off the most current list of products that are SAFE for you to use based on your unique combination of allergies. This list is 111 pages long and is reallly hard to sneak-print at work.
You bring this crazy-big document with you every time you go shopping, and you use tab stickies to organize sections for easier finding of product categories:
Here are some of the products that are safe for me.
Household cleaners- Seventh Generation- these particular ones only, not the entire Seventh Generation line of products. Free and Clear is the only shower gel/soap I am able to use. It doubles as my hand soap, since I am unable to use all hand soaps. This holds true when I leave my house- I must carry a small travel size refillable container of my soap, as I cannot use soaps in public restrooms, at work, or at other people's houses.
Acure lotions, Rusk W8less hairspray, Sebastian hairspray, Mineral Fusion shampoo and conditioner, Acure shampoo and conditioner, Pure Silk shaving cream. Again, these particular scents and formulas only; not all products of one brand are safe.
This is the only safe nail polish I can use. All colors in this Sally Hansen Complete Manicure line are safe.
So what happens if I come in contact with with an allergen? In addition to sometimes having wheezing followed by an asthma attack (I now carry a rescue inhaler in my purse), I always break out all over my body in red, painful bumps that break open, ooze, bleed and itch like there is no tomorrow. They become so painful that even having clothing come in contact with them is painful. I have a cream I put on them to help them heal, but healing still takes several weeks. Things can get a little dicey if I accidently touch a surface that has one of the allergens on it, and then touch my arm or face or something. So I carry antibacterial wipes, Huggies unscented wipes and antibacterial hand gel with me at all times to wipe my hands off after touching communal things (like the fridge or microwave handles at work.
Here is what a recent outbreak looked like. It's a little hard to see in the iPhone pictures taken at work. Here are the ones visible on my neck and chest. Multiply that by your whole body and you get the picture. These pictures were taken before they started breaking open and bleeding.
All of my autoimmune diseases are challenging and life altering, and I do my best to down play each of them as much as possible. Despite it all, I think I still have found a way to lead a pretty nice life, based on a "different" normal than other people. I have been able to meet others in all of my different disease populations.
Sure, when I travel now I have to bring a ton of extra garbage with me. OH WELL. I've got my carry on cooler for my insulin and gluten free food, and my other carry on will be jammed packed full of my 3oz containers of special shampoo, conditioner, face wash, body wash, and lotion.
What's the other alternative- check out of life and be depressed everyday? I tried that before and it wasn't very fun. It took some time to develop confidence and not feel as though I was a burden to everyone around me. As you well know, disease can be very isolating. And that's not to say I don't feel self-conscious sometimes about all the special accommodations I need for food and everything else (like having to ask my work to not use rubber bands on any of my work). My work has been gracious and very kind. But not everyone in every area of my life is always accommodating. I think some people think that avoiding allergens or eating GF due to celiac disease is more a choice than a requirement. But I've learned to work around those situations. I'm a pro now. I'm actually thinking about hosting a dinner party for my friends at my house FOR THE FIRST TIME since being diagnosed with my first disease(2010!!!). Things are easier if they are at my house; I have more control over things and also I don't have to tote around a bunch of extra things. Maybe I'm just getting a little ahead of myself. I'm just going to take things one day at a time.