About Me

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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.

Sunday, July 21, 2013

New job challenge: Sharing your disease info.

Friday was my last day at my job. I was a little relieved, as this week has been IMPOSSIBLE for me to avoid distractions and get work done. There is something about knowing it's your last week at work- your mind will simply not stay focused anymore. My work peeps were great- they threw me a mini party complete with giftsc and a very sweet card. They bought me Reese's peanut butter cups, since they had seen me eat them before so knew they'd be "safe" (gluten free) for me to eat. I am always humbled and grateful when someone attempts to understand my illnesses. And then someone explained the thought process that went into picking out my gifts- making sure the food stuff was gluten free, and making sure the gift stuff was rubber free. I was blown away. It touched my heart. Especially because I work hard to downplay my illnesses as much as possible; I don't talk about them much at work so most people think my diseases are relatively easy to manage. But clearly people were paying attention and that is just sweet.

One of my supervisors was talking to me near the end of the day on Friday, and what she said was so heartwarming, I almost teared up. She said "I know you have been through a lot, and you have to deal with more challenges everyday than anyone I know, but you do it with such grace. You have every reason to have a bad attitude, but instead you have a positive one. You could be Eyore, but instead choose to be Tigger."

Firstly, to have someone acknowledge that my life is actually hard- wow- I just didn't know that anyone noticed.

I start my new job on Monday. I made the right move, but it still is scary. I have to start over with introducing my diseases to my new team and management- ALWAYS a terrifying thing because I worry whether they will wish they hadn't hired me. I wonder if they will worry whether I'm going to miss a bunch of work, or if my diseases will impact my work quality/quantity, etc. I'm already developing a plan in my head for how to introduce things. My diabetes always introduces itself- I wear an insulin pump visible on my upper arm. It also beeps, as does my Dexcom CGM. There's also the every-two-hour blood sugar checks, so there's really no hiding it for any period of time. But the other things, celiac disease and crazy allergies, I will try to hide for as long as I am able. You know, try to spread out the negative stuff that I don't like to highlight, instead of giving it all at once. Not giving out any unnecessary information about myself that I don't need to. I want people to get to know ME FOR ME, not me as related to my illnesses. I can bring my own food everyday- lots of people pack their lunches everyday. No one needs to know I can't have gluten. They will just think I'm a very healthy eater (which I am!). If someone offers me something with gluten, I'll just say no thank you. They don't need the gory details why I can't have it. I think I'd rather have someone think I'm a picky eater than know I have a disease that prevents me from eating it. In time, sure, I'll probably spill the beans. But at least while I'm new, I'm choosing to lay low. I'd like to put off being known as the "sick person" at work for as long as possible. If I had my way, my employer and coworkers wouldn't know about any of my illnesses, ever.

I DON'T want to be viewed as a problem when I start a new job. I am happy that I succeeded in not coming across that way at my most recent job- that I was liked and viewed highly; that my work was praised. I worked hard to have my work and my accomplishments outshine my diseases.

My insurance runs through the end of the month, at which point I will begin my $600/month COBRA payments to continue my insurance (OUCH). It will mainly be used to pay for my prescriptions. I won't be using it to pay for doctor visits, since I won't be able to take time off for the next 5 months (the joy of being a contract worker with no employee benefits, including vacation time). My prescriptions would cost me MORE than my COBRA payments each month, so I'm still making out ahead by paying for COBRA. Since I met my out-of-pocket maximum for the year a long time ago, all of my prescriptions are covered at 100%. But this week when I picked up one of my prescriptions- a cream I have to use for skin allergy reactions- I looked at the cash price of the tube of cream. It was $497.99. WHHAAAAAT! Add to that my monthly insulin ($350), test strips ($339), and about 4 other prescriptions I pick up monthly (that cost less), it adds up to A LOT of dough. Yowzer. It ain't cheap being sick.

I'm starting back up on juicing tomorrow. I went NUTS at the farmer's market this morning; purchasing 5 bags worth of fresh, pesticide-free produce for juicing. I'm not sure it's actually cheaper to get stuff at my farmer's market than at the grocery store. But I like to support the local farmers so if I have to pay a little extra so be it. I went as soon as I woke up- I threw on a tee shirt and shorts, threw my dirty hair up in a ponytail, slipped on some sandals and sunglasses and off I went. I wanted to get there early before the selection was gone. I used to juice on a regular basis, but fell away from it because it is time intensive and somewhat expensive to do. I'd like to say that I'm going to stay committed to making fresh vegetable juice every morning before work, but that means I'd have to commit to getting up probably 1/2 hour earlier and I just don't know how likely that is. I might make it the night before, even though I know that the juice loses some of it's nutrients overnight.

Tomorrow is Sunday, which means it's prep and chop day. The day I make ALL meals for the entire work week- breakfasts (usually an egg bake that will last all week), lunches and suppers. I also pre-measure out all snacks. So I'll likely sleep in, start the morning with a cup of decaf coffee or tea and a nice egg white scramble. Maybe do some light reading and relaxing. Then it's turn the music up time and start cookin'! Later in the day I will put together a few outfits for the week, and then stock my work bag with glucose sources, my own pens and office supplies (since I can't use ones with rubber grips) and everything else I might need. It sure takes some of the stress off when you are prepared ahead of time.











4 comments:

  1. I teared up reading about the nice compliment your manager gave you. What a wonderful way to put it. I wish you all the best as you start your new job this week!!

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    1. Thanks Katie! I was touched when she said it. It was nice to have someone recognize the challenge of living and working with disease.

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  2. Good luck with your new gig-- Don't be afraid to Wow them!

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    1. Thank you Stephen- I had a great 1st day!

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