As an 80’s kid, I grew up on watching Sesame Street, as well as other parental favorites like The Berenstain Bears, Care Bears, Fraggle Rock, and The Wind in the Willows. You know the drill, if a parent is sitting their kid in front of the box for a couple hours, it better be G rated and have good morals and lessons learnt! At least that’s how it was in the 80’s in my neighborhood of Tantalus and Makiki Heights. You could watch a good program, or you could play outside. Those were the options. No video games, no trips to the movies or the local Chuck E. Cheese (which was the only place those days that really had any games and ball pits). Wholesome fun. And if you didn’t come back with at least one scratch or bruise on you, and the elaborate adventure story to back it up, you clearly hadn’t had a fun day.
I can’t say that Sesame Street was my favorite show, but it was definitely the most watched since it aired every day. And to this day I still have memories of all the lessons learnt from that program. I learned about sharing a tuna sandwich from Big Bird, homosexuality from Burt & Ernie, how to count from Count von Count, and that more than anything I wanted Snuffleupagus as a pet. Good times.
One particular skit popped into my head the other day while at my new Rheumatologist’s office. I was marveling at the fact that my doctor was once again doing a thorough physical examination of my body and joints. My old Rheumy would barely touch my joints every time I came to visit. In fact he hadn’t given me a thorough look over since our first appointment three years ago. And yet here was my new (fantastic) Rheumatologist, on my second appointment, giving me a full physical exam. I loved this woman!
When we got to my arms, she asked me to extend them, and upon seeing that I couldn’t straighten them, asked how long it had been since I stopped being able to. The question carried my memory directly back to a Sesame Street skit about two characters who didn’t have elbows. And because they didn’t have elbows, they couldn’t bend their arms to eat the fruit they had picked. It was, of course, a lesson in working together. Finally, they fed each other the fruit, instead of trying to figure it out on their own. Problem solved, lesson learned. It’s amazing that that skit has stayed in my mind all these years.
Doesn’t of course change the fact that I can’t straighten my arms. Nor the fact that I haven’t been able to in over a year. The swelling in my elbow joint has become to much, and the joint is too stiff and tight. You wouldn’t think that matters much, but not being able to straighten your arms is really quite annoying. Not to mention the stress that you feel when you see your own body part unable to perform as it should.
Every day we are taught lessons, or even just remember old ones from days already lived. I only wish I knew what lesson my body thinks it’s teaching me by not letting me straighten my arms….
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I can’t tell you how ridiculous it is when someone tells me how jealous they are of my situation. I’m sure they don’t mean my illness, but what they assume my day to day life is like, but that’s what it comes out as.
“You’re so lucky you get to sleep in every day!”
“I wish I could take naps whenever I wanted!”
“You’re so lucky you get to use that handicap placard!”
“I wish I didn’t have to go to work!”
“I wish I could get free food!”
To set the record straight, it’s incredibly insulting to hear comments like these. Most times it feels like a slap in the face. Do these people think I want to live like this? That I enjoy it?
First of all, I don’t get to sleep in every day. Most days I’d be lucky to sleep past 5am. That’s because at 5am is when the first pains of the day start. I take my morning meds, and then in lie there in bed willing them till kick in so that I might be able to move for the rest of the day. If I have sleep in past 5am, it usually means something is terribly wrong. Maybe I have a fever, or extreme exhaustion, or on the verge of a new illness or diagnosis, either way it’s not something to be excited over.
As for naps, I’m sure while most people would love to get an afternoon nap in each day, I look at mine with dread. I have medications-induced Narcolepsy. This means I have no control over my body and when it falls asleep. I could be mid-conversation, holding a hot beverage, or even standing at a crosswalk, and just doze off. Take a moment to realize how dangerous that can be for me. I have on several occasions spilled steaming hot drinks on my lap, dozed while walking and hit things, and thank goodness that I snapped out of it that day on the road. I could have been hit by a car had I fallen into the road. And taking scheduled naps do not help. Getting enough sleep has nothing to do with this.
The reason I was issued a handicap placard is because sometimes it’s too painful or exhausting to walk across a parking lot to a store or shopping center. I only use it during these instances, and don’t abuse the privilege if I’m feeling ok. Please remember that doctors only issue these to patients whom are legitimately disabled. This isn’t something you can just pick up at the store. And it’s not “super cool” to have one. In fact it’s a big blue reminder that I’m very sick.
Gosh, I miss work. I miss the camaraderie of my fellow coworkers, I miss my desk, I miss my clients. It sucks not being able to work. Sure, I admit that the first couple months were nice, a little rest from the daily grind. But the truth of the matter is that I like working, I like keeping busy, and I like feeling as though I accomplished something at the end of every day. Please don’t tell me how lucky am to not have to work. I guarantee if you were in my shoes you would understand how very boring and depressing it is to not work. And how incredibly hard it is not having a paycheck.
Which brings me to the complete and utter stress of having to use food stamps and financial aid services. I can’t stand not having my own money. Budgeting when you have next to nothing is a job in itself. I am given a very very small amount of money to live off of each month and that’s not spending money. It has to cover my medical bills, my utilities, my gas bill, my phone bill, household items like soap, detergent, and toilet paper, and money for incidentals like parking fees, stamps, batteries.
I never have enough money to cover these things. In fact each month I’m about $200 short of what I need to cover basic living expenses. Which means that each month I have to give up certain necessities, usually I rotate them. I can’t always have my phone on, $100 is a lot of money, so sometimes it’s not on. Medical bills are in collections because I can’t pay them. Mom has to help me with cat food and litter sometimes. I’ll admit I’ve taken toilet paper from public restrooms before because I was out at home. I accept odd bits and pieces from family and friends’ pantries and fridges. My best friend buys me milk from time to time. For clothing I shop only at Goodwill and Savers, and other used clothing stores, and only if my steroid-fat body is growing out of the ones I have, or I need some more summer dresses to survive the heat of the summer and my hot flashes. So when you do see me spending money, say at a drugstore or treating myself to a bubble tea at the local cafe, know that it was not on a whim, but carefully planned and budgeted and sacrificed.
Food stamps never are enough for the month. It only covers food, nothing hot, and nothing non-food related like foil or sponges. I try to spread it out through the month, and only shop certain items at certain stores. You learn where everything is the cheapest, all it takes is patience, and time. Meat at Times, dairy and fresh produce at Safeway, canned and dry items like pasta and cereal at Wal-Mart, gourmet treats at Whole Foods, Costco for bulk items like frozen fish, fruit, and eggs, and never ever Foodland because they’re overpriced on everything. And if I’m between appointments, and need a quick snack or bottle of water, 7-11 is always a good fall back, as long as it’s not out of the hot case.
Do not tell me you wish you were in my shoes. You don’t. You would be appalled at the state of my shoes. Be happy with your income and your freedom and the fact that you need to walk further in the parking lot. I am jealous of You. Oh to be well again. Oh what a wish that is.
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