Reflections on a New Year

20121231-075547.jpg

At midnight this New Year’s Eve I will kiss my amazing husband and wish my friends a happy new year. But what does that really mean? “Happy New Year”?

2013 holds many mysteries. Family life, faith, medical treatments; life in general is a mystery. My son will become a Boy Scout in February and go to middle school in the fall. Oh the mystery of the tween years. So many new things to experience.

A happy new year for me will mean being able to experience all things to their fullest. It might require more planning than I like. I have always loved the “fly-by-the-hem-of-my-skirt” lifestyle. But planning is the curse of autoimmune illness. You have to learn your limits everyday (because they change with each new day). You have to be sure you don’t borrow too much from tomorrow so you can enjoy today. When you do, it means days of recuperating. Days better spent enjoying life.

I walk by faith knowing that my arthritis serves a higher purpose. I don’t pretend to know what that purpose is. And I do not question it. I see the good things being “sick” has brought. Yes, I said good things. Being sick has made me a better mom (most of the time). Wong sick made me focus on what is truly important instead of what society says is important. Being sick has given me opportunities to do things I would not have done.

I don’t make New Year’s resolutions. Less room for failure. But I do reflect and make notes on things that could be changed in my world. I hope that when I reflect on 2013, I find that arthritis did not define me, but refined me.

Happy New Year!

Pole Dancing

First off, let me put it put there that I am NOT a stripper. No danger of that ever happening for a number of reasons.

However, I have learned how to work a pole; the pole currently holding the IV medication that makes it a little easier to fulfill my obligations in this thing called life. The big bag holds saline to keep me hydrated and flush the lines. The smaller bag holds the magic…Remicade. The magic that will make the next eight weeks bearable for my family, friends, strangers I happen to run into and me.

Did you know that Remicade infusions are considered chemotherapy? I didn’t for a long time. I mean, cancer patients get chemo, not arthritis patients. Surprise, it’s the same thing! And the medicine dripping into my veins from this pole makes my life manageable. I still need help chopping veggies and opening the water bottles. But I can walk mostly unaided and can sit through a recital. That means that the three hours I spend dancing with this IV pole every eight weeks is totally worth it.

So today I’m pole dancing with Christmas carols in my ears and thankfulness in my heart. I’m thankful that I have some medication to help; that I have medical insurance to help; that I have a husband and son that understand; and mostly thankful for a God that is using this thing called arthritis for a bigger purpose.

Parking Problems

Last Friday I got a parking ticket. At the grocery store.

I went to a school program to cheer on my son. I made an effort to look like I’m not “sick”. Fixed my hair, makeup, wore nice clothes. I sat on hard, metal folding chairs for the duration of the program so I was extremely uncomfortable by the end. I waddled out to my Jeep which was parked in a handicapped spot near the front doors. I looked at my parking tag hanging on my mirror and thought “I’ll just leave it since the store is not that far.”

I needed to run by the grocery store for what was probably the fourth time that week. It was early in the day so I parked in a handicapped spot and ran in for the four items I needed. I was probably there for 15 minutes at the most.

As I returned to my parking space there was a man putting something on my windshield. It didn’t register right at first what he was doing. I honestly thought he was putting some kind of flyer under the wiper. Then it hit me.

“Why are you giving me a parking ticket? My hang tag is right…” I stopped talking because there was no tag hanging from the mirror.

I found the tag in the door pocket where I keep it while driving. The tag swings around and is most annoying if left to hang while driving. Plus, it says “Remove Before Driving” right on the tag. The weird part is I don’t even remember taking it down.

The officer was cordial enough but said I sure didn’t look like I needed to park there. But if the tag is mine I could go over to the station and there would be a 50/50 chance they would let it go. I guess that’s what I get for making an effort to not look sick.

Fortunately and thankfully I took my paperwork and tag to the station and they let it go. But I was reminded that if the tag isn’t there, next time they won’t let me off. So now my tag is stuck in the windshield. I hate leaving it there all the time, but it’s not the first time I’ve forgotten to hang it up, so it’s there permanently now.

Funny, the day I got my first tag at the court house the lady that processed it said I sure didn’t look like I needed one. In fact she only gave me one tag instead of two. (You can have two tags here if you have multiple vehicles and don’t have a handicapped plate) This meant that whenever we needed to use my husband’s vehicle, I had to remember my tag or hoof it.

One of the first things my doctor told me when we were working on a diagnosis was to save steps wherever I could. Anything that kept me from tiring faster, or getting too stiff to move was fair to use.

The last big trip to the grocery store my husband went with me. 15 minutes into shopping I was waddling. By the time we finished our shopping, I was shuffling along slowly enough that people were giving me exasperated looks because I was holding up traffic in the grocery aisle.

I’ll admit vanity gets the better of me most of the time. If I’m going out anywhere, I try my best to look like I’m healthy. But sometimes I wonder why. If you don’t “look sick” people just assume you are faking or lazy.

I am not faking. I am not lazy. Yes, I am “too young to have arthritis” but it does not change the fact that I do indeed have this nasty autoimmune disease. It does not change the fact that sometimes the steps I save by parking in a handicapped space means being able to walk through the grocery store without shuffling.

Just because I don’t look sick does not mean I am not sick. Because, I most certainly am. I truly hate using any handicapped advantage. But if it means being a little less miserable, a little more pleasant to be around for my husband and son, then I will be using it to my advantage.

20121208-105807.jpg

Average Can Be Extraordinary

This has been a good week I suppose. I’m still vertical. I feel ok. Pain, stiffness, swelling has been at bay. (Translation, I can carry out my normal daily functions with only a little help).

Why write about a mundane, average week? Well, it’s been so long since I have had one that average is really quite extraordinary.

It sounds silly to most people to think that things like buttoning buttons, chopping onions, driving, and grocery shopping is extraordinary. But when it’s something you can’t do most of the time, it’s a pretty big deal. I like having enough strength in my hands to open the jar of spices by myself. I don’t like asking my almost 11 year old son to chop up the potatoes for dinner. (Though I’ll admit he’s really good in the kitchen).

I cherish the most mundane things these days; being able to put on my makeup without needing to rest, spending a day out shopping without having to use a wheelchair or cane; enjoying our small town Christmas parade.

The little things become a very big deal when they are the things that challenge you the most. And while I’ve always enjoyed a challenge, sometimes I can’t meet them head on anymore. So when I can, it makes my day a little brighter.