On Dismissive Doctors: Dorothy Zbornak Is My Hero

“You need counseling.”
“You should exercise more.”
“You’re a perfectionist.”
“Is someone abusing you?”
“It’s so funny how your legs shake! Why do they do that?”
“It’s all in your head.”

Sound familiar? Like something a doctor or nurse might have said that prevented you from getting a proper diagnosis and appropriate treatment? I bet you have. I know so many women who have had doctors dismiss them while blaming their symptoms on vague and baseless issues: stress, school, family, poor self-esteem, age. It seems to happen more often to women, especially younger women.

When I was 18, I had a doctor scold me because I stated that I had stomach issues but also pointed to my lower abdominal area. “I can’t help you,” he said. “If you don’t know where your problem is.” And he didn’t. I felt like what could have been a teaching moment turned into an excuse for him not to help. It was the beginning of my illness, and I didn’t know how to advocate for myself or how to even explain what was going on. I thought a doctor would work with me to understand what was happening to my body; instead, I was humiliated. Maybe I was mistaken to expect that a doctor is also an educator, someone who helps their patients learn more about their bodies and overall health but I don’t think I was wrong. (One day — years later — I was working at the public library when that very same doctor came to my desk to check out his items. I don’t think he remembered me and I felt so angry at that moment. Not enough to say anything to him but just enough to think to myself: “I HAVE LUPUS! LUPUS, YOU FOOL! AND RAYNAUD’S! AND FIBROMYALGIA! AND SIBO! AND…”)

What I wish I could have done is what Dorothy does in the Golden Girls clip below from a two-part episode called “Sick and Tired.” (The story is based on the experience of Susan Harris, one of the creators and writers of the show.) Dorothy has been suffering from severe, crippling fatigue for a while, going from doctor to doctor, trying to find one who will take her symptoms seriously. Eventually she finds a specialist who cares and listens and is even able to provide her with a diagnosis. At the end of the show, she has a run in with one of the more terrible specialists she’s seen; he had blamed her problems on her age and suggested changing her hair color to feel better about herself.

It’s a funny but moving moment. I know it’s something I wish I could have said. At this point in my life, I’m fortunate to have found a great primary care physician who’s referred me to excellent specialists. If you don’t have a diagnosis yet and have had bad experiences with nurses or doctors, please don’t give up. Take someone who can advocate for you to your appointments, ask friends or doctors you trust for recommendations. If you need to fire a doctor, something that’s so hard to do, write a letter explaining why you’re moving on or don’t (sometimes we don’t have the energy to confront a doctor in this way). It’s never easy! I’ve been fortunate that moving made the decision for me.

But now, if I had to do it, I think I would probably do three things to prepare me for this process: (1) request my records before I fired the doctor so I can see what they have said about my condition and me (that way I’ll know what info my new doctor will see), (2) write a calm and clear letter stating my reasons for letting them go and maybe send a copy to a director, and (3) explain to my new physician the reasons why I decided to find a new doctor and provide them with a written timeline of my symptoms and any treatment I may have had. Writing a letter (2) makes me anxious just thinking about it! So if I’m not brave enough or don’t even care to write a letter or give any kind of explanation when the time comes to say “Later, dude! Thanks for nothing!”, I think at least getting my records and having a conversation with my new physician would still be very helpful.

-md

Advertisements

Short Fiction: Laundry by Maria Deira

I’ve convinced myself that if I do even one more load of laundry I’ll wither away, that my insides will dry up and turn to powder, that my skin will have the soft tackiness of dryer sheets, that I’ll shrink and flatten and smell like pancakes. Really. I know this will happen. I feel it in my gut. I dream it. I know it.

So the hamper overflows, clothing carpets the floors, layers of towels drape over the shower rod and I’m lying on the couch crying my eyes out because I don’t have any clean underwear left.

My mom calls, “I’ve been doing dozens of loads of laundry every week for over thirty years and I’m still here. You stop feeling sorry for yourself, get off the couch, and separate your lights from darks.”

“Well, I can do that much,” I say. “I just can’t stick them in the machine and start it.”

“Do you want me to go over there and do the laundry?”

I don’t say anything.

A couple of hours later she’s shoving towels into my washing machine. “You know this is disgusting, right?” she asks me as I hand her several gray wash cloths. They used to be white.

“I know.”

“And you know your fear is just in your head?”

“Where else would it be?”

“Don’t get smart with me,” she says. “I’m just trying to help.”

“Don’t treat me like a baby. I’m crazy, not dumb.”

She dumps a scoop of detergent in the wash and slams the lid shut. “You’re not crazy, you’re just — you’re just looking at the small things.” She smiles. “You’re over thinking the monotony of daily living. Washing dishes, brushing your teeth, doing the laundry — “

“Taking a crap.”

“Ugh. Don’t say that.”

We’re quiet for a moment.

“It’s only the laundry,” I try to explain. “Everything else, it doesn’t bother me.”

She chuckles, which is odd because my mother isn’t a chuckler. She crosses her arms, holding herself, and starts giggling.

“What?” I say.

“I feel like I’m being tickled. My skin feels all prickly.” She laughs now, gasping to speak. A single happy tear leaks from the outer corner of her left eye. And then it happens. She turns white, her skin becomes flaky, and before I know it my mother is a little mound of white powder on the floor. But the air smells like lavender soap, not pancakes.

I start to cry because it’s my mother. No one wants to see their mother transformed into dust, but there’s nothing I can do it about. How do I undo what’s been done? Oh God, I think, I’ll have to tell my father. And I know he won’t believe me, not until he comes over and sees it for himself, and when he does finally believe it he’ll blame me.

Then I have an even more horrible and selfish thought: it’s too bad she disintegrated so fast because I can’t really say, “I told you so,” can I?

I wipe away my tears, unplug the washing machine and the dryer. I sweep up what remains of my mother and pour her into a wine glass because it’s classier than a juice glass and if you know my mom, you know she’s classy. So I pour her into a wine glass which I place on the windowsill — this way she can see the sunset or at least feel the sunset or something. I get myself a bowl of dry cereal and eat it slowly, waiting for my father to call. I’ll have to figure out what to do about clothes and what to do without a mother.

I’m pouring myself another bowl of cereal when I hear my mother’s voice. I don’t know where it’s coming from, but it’s all around me and inside me and the vibration of her words gives me goosebumps. “Stop feeling sorry for yourself,” she says. “Get out there, go do something. Be something. At least pour some milk on your Cocoa Puffs for Pete’s sake.”

I’m smiling now. I’m thrilled. “I told you so, Mom,” I say as I get up to get some milk. “I told you so!”

——————————–

laundryMaria Deira has lupus, fibromyalgia, sleep disorders, and a long, sad list of other chronic and invisible illnesses. Her fiction has been published in A cappella Zoo, Fiction Southeast, Word Riot, GigaNotoSaurus, and Strange Horizons. Maria is also one of the editors of And Then I Got Sick. You can find more of her work at Writing, Writing, Lupus Fighting

“Laundry” was originally published in Every Day Fiction (2011).

If I Were Healthy

Living with a chronic illness means you are sick more often than you’re not.

You endure some form of dull aching, sharp shooting, stabbing, burning or searing pain, crippling fatigue, unpleasant prescription medication side effects, joint, organ, muscle and soft tissue damage, loss of hair, eyesight, hearing, cognitive function, or some other infliction as a result of a chronic illness on a pretty regular basis.

*Taking a deep breath*

(That was a massive run-on sentence…my apologies)

The list can actually be, and sometimes seem, endless.

So, when you get that one day (or a few if you’re fortunate) where you can do anything at all that you haven’t been able to do in a long time, it’s like you’ve…

Oh, I don’t know…

WON THE LOTTERY!!!

And you run around like a mad person, maybe not on a shopping spree to get that Maybach you always wanted, but catching up on household chores, getting outside to enjoy the weather (whatever it may be), waving, smiling, and chatting like a Magpie on speed to whomever crosses your path, and all because today you have a reprieve from your usual aches and pains and you feel…

ALIVE!!!

Speaking for myself, I can assure you that when I get a good day or two, I keep my composure, put my shoulders back, hold my head up high, pull my belly-button into my spine and step outside.

Keeping my private desire to chase squirrels all over the yard to myself, I calmly carry on with my day as…

If I Were Healthy!

I changed the words to Beyonce’s song “If Were A Boy” to “If I Were Healthy” in an effort to describe what so many living with chronic illnesses wish, strive and pray for on a daily basis: to be healthy.

 

~Today is a Gift that I Choose to Live Thankfully~

FalanyaPictureMy name is Falanya and my blog chronicles the life I’m living right now. Lupus sufferers commonly refer to themselves as “Lupies” and, interestingly enough, this painfully crazy disease can provide some pretty loopy moments. It’s those moments that can lend a little laughter to an otherwise unfunny existence.

 

A Lupie Existence (Falanya’s blog)
 A Lupie Existence on Facebook
Email: aLupieExistence@gmail.com

Blame It On the Pr-eh-eh-eh-eh-ednisone!

So, just what am I blaming on Prednisone?

Well…so many things!

But I will only mention a few and to start with, these:

Predinose cheeks

See it?

See THEM?

They’re my newly formed chipmunk cheeks and the Hunchback of Notre Dame hump on the back of my neck that I’ve got going on.

Where did they come from?

Well, those lovely additions would be the result of my being on Prednisone, a steroid, for the past 7 years.

You see, Prednisone squashes your immune system in such a way that when my chronic inflammatory disease is flaring, to simply take an extra 2.5 milligrams or more reduces swelling and gives me some blessed pain relief. However, living on Prednisone is a double-edged sword and its side effects are nothing to sneeze at!

If you take a glance at the long list of things that it can do to your body, you’d no doubt wonder why it’s prescribed even at all! But as one of my mother’s rheumatologists told her many years ago, “There’s just nothing else out there like it.”

My journey with steroids began when my rheumatologist prescribed Prednisone for me on a two-week trial basis to see how I would respond to it and, boy, did I respond! I felt so much better after the first few doses that I called up my boss/friend and told her I was coming back to work.

My legs no longer felt as if I were dragging extremely obese children from each limb and I could walk with my head held high on shoulders pushed back – a stance I hadn’t been able to attain in months!

I loved Prednisone!

When the trial was over, my rheumatologist had the information that she needed: my body responded positively to steroids, indicating that I had an auto-immune inflammatory condition.

I have been on steroids ever since and I have personally exhibited the following side-effects that I blame on the Pr-eh-eh-eh-eh-ednisone:

Heightened Aggression

I don’t back down easily in a discussion, heated debate or argument anymore.

It’s like my cut-off switch has been disabled and the fail-safe mechanism that would signal for me to shut up, is no longer operational. As a result, this creates some pretty “interesting” discussions between my mother and me, since she is usually the only other person in the room.

“No, Falanya, I did NOT say that.”

“Yes, you DID!” is my excited reply.

“I’m not crazy, Mom! You said Barney was GRAPE colored!”

“I did not and I will not continue this conversation with you,” she replies.

“He’s purple, Mom. PURPLE!!” I almost scream. But not too loud, because although I might be under the influence of steroids, I’m no dummy. That woman, even while laid up sick in her bed with Lupus, will still manage to slap the fluffiness right out of my chipmunk cheeks with lightning speed.

Gnawing Hunger

Have you ever felt your stomach writhe and cramp in pain as a result of hunger?

Now, let me ask you, have you ever felt this gnawing sensation in your gut with the presence of food?

Let’s say you have just eaten a full course meal with an appetizer and full dessert included. How do you usually feel? I’m willing to wager that you can barely breathe let alone still be hungry, am I right?

Enter Prednisone.

Not only are you still hungry but you are ravenously hungry and like a caveman you scavenge through the refrigerator for a small wildebeest to devour.

I may exaggerate a little, but I lie to you not!

Weird Fat Placement

This side effect goes hand in hand with the gnawing hunger. When you eat like an insatiable animal, sleep hours on end like you’re the King of the forest, you will gain a fat pocket or two and in some less than desirable places.

My cheeks have puffed up a little but I don’t have the distinctive moon face that so many steroid users exhibit (unless I am in some serious denial here) but I do exhibit the Hunchback of Notre Dame’s hump at the base of my neck and across my shoulders.

Mom has had this hump for years due to being on Prednisone for 20+ years, and I used to love petting it and teasing her about it because the glances she shot me were priceless and I’d just laugh and laugh and laugh.

And apparently, little boys and girls, if you laugh at someone else’s deformity, the same deformity will be likely bestowed upon you and having my own hump isn’t anywhere near as funny as it was to tease my mother about hers.

There are so many other serious side effects that Prednisone is responsible for (Osteoporosis, diabetes, glaucoma, depression, high blood pressure, excessive sweating, sleeplessness, etc.) but as you can see, it can be a wonderful blessing and at the same time a horrid curse.

For the moment, as new and weird side effects continue to pop up causing me to become more of a freak of nature, I won’t blame it on the Goose, blame it on the Vodka, blame it on the Henney or blame it on the ‘Tron.

I will look at my pill case and blame it on the Prednisone.

So, as if blogging about my life lived on Prednisone wasn’t enough, I got the crazy idea to re-work the lyrics to Jamie Fox’s song Blame It On The Alcohol and create my own version called Blame It On The Prednisone.

I like to find the funny side of the loopy life I’m currently living to keep myself smiling and hopefully bring a smile to the faces of those who can relate and maybe educate those who cannot.

I hope you enjoy this video as much as I enjoyed putting it together!

~Today is a Gift that I Choose to Live Thankfully~

FalanyaPictureMy name is Falanya and my blog chronicles the life I’m living right now. Lupus sufferers commonly refer to themselves as “Lupies” and, interestingly enough, this painfully crazy disease can provide some pretty loopy moments. It’s those moments that can lend a little laughter to an otherwise unfunny existence.

A Lupie Existence (Falanya’s blog)
 A Lupie Existence on Facebook
Email: aLupieExistence@gmail.com