My Chronic Life

You can tell I’m sick when I don’t want to go to Disney World on vacation. Yes it’s gotten to that point. We’re leaving this Sunday for six days at the World, staying at a new hotel, Animal Kingdom Villas, dining at the Crystal Palace and all I can think of is sleeping.

What a pain in the butt to feel so tired and worn out from doing nothing. I’m actually dreading getting ready, especially the night before and the morning when we leave.

My husband and I have packing down to a science. We each have our own chores to do and we get everything done in a few hours. Remember we have to pack food and of course lots of medicine and supplies for me so that adds to our time.

I know I won’t be able to help him much. I know that means packing will take longer. I know I’ll fall asleep on the way there and be grumpy when we arrive. I know our room won’t be ready until 4 PM.

So you can see that I’m not into this trip if I’m already griping about packing. Maybe if we had some new Briggs and Riley luggage I could handle it better.

Ummm, I’m not so sure about that.

I’m pretty desperate at this point. I’m trying to get energy to be somewhat capable of doing things like stay awake for more than three hours at a time, fold laundry, cook dinner or even carry on a normal conversation without yawning.

I don’t drink coffee. I use decaf tea. I don’t even drink soda. But like I said I’m desperate here. Maybe I should try one of those espresso machines so I can just add the coffee and let it do it’s stuff. I’ll drink a small cup and see what happens.

My luck, I’ll end up with worse heart palpations than I already have and still feel exhausted. A girl’s gotta try.

Since I’ve been going through the unknown illness, I’ve been racking up medical bills. Even with very good health insurance, my constant need for new medications, blood draws and dr. visits, have really eaten up a good chunk of our budget. Then there’s the big mistake we made at the end of last year.

Call it one of those really bad brain fog moments. Call it stupidity. Call it a bad choice. But, we forgot to sign up for my husband’s company’s Flexible Spending Account (FSA). That would have paid all of our medical expenses that our insurance doesn’t cover plus over the counter items too. It even includes eye glasses.

We just totally forgot about the deadline and missed it. Now we’re scrambling to pay for these bills, as well as save for our daughter’s wedding next year. We’re thinking of finding a credit card with a zero or low interest balance transfer so we can pay things off and have money to try to save too.

For anyone with a chronic illness if you are able to take part in an FSA, take advantage of it!

Medical advice, unwanted, uneducated, annoying, from kind people who care but are driving me nuts - what do I do about it?

I’ve been so frustrated and yes cranky, very cranky and on edge. My emotions are all over the place. This period of not knowing what is wrong with me is making me angry. This sleepiness, inability to go out, drive, move around and now the pain is getting to me real bad.

I don’t want to snap at people who mean well. I’ve shared with them that I’m waiting to hear from the Kidney Specialist. I’ve had tests done and have started some a new medication. But still they feel that this vitamin they saw for sale, this treatment, exercise, technique will help me.

So instead of screaming, I smile and nod my head. I thank them for thinking of me. I half listen to them on the phone. I sometimes find myself falling asleep.

I’ll tell you something though, I don’t answer the phone all the time. I screen my calls. If I do answer and the advice ramble begins, I’ll excuse myself and say that I’m not feeling well.

How do you handle unwanted medical advice?

photo credit: srhbth