Tales from the sick bed

Over the last several years, writing has become an important and rewarding outlet for me.  It has taken an especially important place in my life due to the fact that for the last 15 years, I have been living with and trying to effectively manage a chronic illness.  I'd like to share some of the ways writing has enriched my life and helped me to compensate for some of the losses and limitations I experience, in the hopes that I might encourage some of my fellow members of the constantly sick club to take up the metaphorical pen.

Creative and intellectual fulfillment

I have a degree in chemistry.  I was a straight-A student.  Lupus makes it impossible for me to work a full time job without becoming dangerously and constantly ill. Many people with chronic conditions are in the same boat, and it can deal a terrible blow to one's self-esteem.  Writing, whether for publication or simply for oneself, can provide a sense of accomplishment that can make the difference between contentment and despair.  Sharing your writing can make an impact on the world around you and provide you with a new sense of purpose.  Even if you only reach a few people, those few people have richer, happier lives because of you and your work.  Moreover, many of us experience the "brain fog" common to the chronically ill.  Mental deterioration is especially common if your disease is neurological in nature.  Writing or other creative outlets can help keep the brain firing on all cylinders.

Flexible hours and work environment

Writers don't have a fixed schedule.  The work can be done any time of day and in almost any location.  You can write in bed.  You can do research in your doctor's waiting room.  You can brainstorm with an IV needle in one arm and a blood pressure cuff on the other.  You can set your own realistic deadlines, keeping in mind your strengths and your limitations.  Chronically ill people hate the perception that we are unreliable because we often have to cancel plans or make adjustments to schedules in order to manage our symptoms.  At least with writing, or other artistic pursuits, we don't have to worry so much about letting anyone down or pushing ourselves so hard that we pay for it later.

Escaping the house with your imagination

Being sick all the time can be incredibly boring.  Being stuck at home can be depressing.  Limitations posed by your condition can be infuriating.  But your characters can do everything you wish you could do and go anywhere you dream of going.  I will never be able to sunbathe on a beach, and I'm unlikely to run a marathon, but my mind has no such limitations.  Daydreaming is fun and stress reducing, and as a writer, you get to call it work.  

Easing loneliness

Isolation can be one of the most damaging aspects of chronic ailments.  Sharing your writing with your friends and family, or with the online world at large, can help you make connections.  The internet makes it easier to find people with whom you can share your thoughts as well as your art.  You don't have to write a novel.  You can share a poem or a short story.  You can blog about your favorite show, or book, or sports team, or hobby. You can write about the political or social issues of the day and discuss your views with the like-minded and not so like-minded.  It can be terrifying to put your work out into the world, just as it is scary to go to a party with a bunch of people you don't yet know.  I try to tell myself that nothing worth having comes without risk.

Trying to practice what I preach, my new adult paranormal fantasy novel She Dies at the End is now available fon Amazon Kindle.

The Girlfriend's Guide for the New Lupus Patient

Getting diagnosed with a chronic illness can be overwhelming. Sometimes it can be a relief to have a name for what you're going through, especially if you've been suffering for a long time with no diagnosis or treatment. Even still, you are bombarded with information and decisions that need to be made, and it's a lot to handle. Here are some tips from someone over fifteen years down the road. The advice is specific to Lupus, but a lot of it would also apply to other chronic conditions or autoimmune disorders.

1) Find a doctor you trust.

Your rheumatologist (and his or her nurse) need to be good. You will hopefully be with her a long time. She needs to be someone with good judgment who takes your quality of life seriously. If your blood work looks okay but you feel like death, she needs to take that seriously. She should ideally have connections to other specialists you might need (dermatologist, nephrologist, perinatologist, etc.). She needs to be willing to get on the phone with your other doctors. She and her nurse need to be willing to battle the insurance company when they try to deny coverage for something you need. You need compassionate warriors. Don't accept less.

Obtaining the health care you need is infinitely easier, of course, if you have insurance, money, and reliable transportation. If you're lucky like me, thank your stars.  

If you are not so lucky, the programs meant to help those of us who don't have those advantages can be hard to access, but you must persevere. It isn't fair that you'll have to fight the bureaucracy, but your life depends on it. There are people who can help you, like disability attorneys and hospital social workers. Seek advice in Lupus groups from people who’ve successfully navigated it.

2) Stay out of the sun.

For real. If you are an outdoorsy person, and you wish to remain outdoorsy, you have to take a lot of precautions. It's not fair, but it's the truth. A large percentage of lupus patients get worse with UV exposure. That means hats. That means sunscreen every day, at least SPF 30. That means long sleeves. That mean minimizing your beach and pool time, buying bathing suits that cover you up, using umbrellas. It means maybe needing to wear gloves when you drive, or getting coatings on your windows. That mean no tanning bed ever, ever again. Ever. Like, you could die from that nonsense. That means take your vitamin D, 'cause you're sure as heck not making much yourself.  

The one good side to this is that you will look young for a long time. Your dermatologist will be super impressed, and you can giggle at everyone's crow's feet at your high school reunion.  I have not left the house by day without a hat on in 15 years. It shows.

3) Diet and supplements will help, but they aren't a cure.

Eating right can help your disease. It can definitely reduce inflammation. It can help you manage your weight, which will help your joints. It can help your energy. It may even help you reduce your medication intake. But the raw carrot diet is not going to stop your white blood cells from making auto-antibodies. You still need a doctor. You might still need medication. Don't pull a Steve Jobs and try to use your Google MD to try to cure a complex illness with veggies, especially if you have organ threatening disease or are pregnant.  

The most common supplements thought to be helpful for people like us are fish oil, turmeric, vitamin D, calcium, folic acid, and DHEA. Some of us take iron for anemia as well.  Ask your doctor before you do anything.

This leads us to . . .

4) Take your meds.

I know taking lots of medication is scary and a pain in the ass. But if you need it, you need it. Taking your meds can help prevent organ damage, even when you only have mild lupus, even when you're having no symptoms at all. If you're having side effects, tell your doctor. Don't just stop.

That being said . . .

5) Get your eyes checked.

If you are taking Plaquenil (aka hydroxycholoroquine), you need to be screened at least once a year for Plaquenil toxicity. This medication can do irreversible damage to your retina, so it's important to catch this side effect early. In the first 5 years of use, it is rare, but after 10+ years on it, your risk increases greatly. I never thought it would happen to me, but it year 17, we found signs of damage and had to discontinue the medication. Don't blow off your ophthalmology appointments!

6) Try to avoid the 'roids.

Look, if you have organ threatening disease, and your doc says steroids are all that's standing between you and dialysis, then take the damn prednisone. And if you're having a flare and need prednisone for a few weeks to tamp things down, go for it.

But if you have mild to moderate disease, and it's about dealing with pain and fatigue and quality of life on a long-term basis, try other stuff first. Injectables and intravenous or subcutaneous Benlysta sound scary, but they won't leech the strength from your bones and teeth like prednisone does. They won't turn off your adrenal glands like long-term prednisone does. They won't mess up your skin and your figure like long-term prednisone does.  

And they won't give you crippling withdrawal when you need stop taking them like prednisone does. It took me a year to get off of 5 mg of prednisone a day, and I was sicker than the Lupus ever made me.  

We have better options now. Talk to your doctor about possibly using them instead of prednisone.

7) Watch out for infections.

The number one killer of Lupus patients is infection, not Lupus. Our bodies don't fight germs well, and that plus immunosuppressive drugs equals lots of infections. Take them seriously so you don't wind up in the hospital. You think you might have a UTI? Call the doctor. Lingering cough? Call the doctor. Fever over 100? Call the doctor. Wound won't heal? Call the doctor. When in doubt? Call the doctor.

8) Exercise how you can, when you can.

Moderate exercise can help you with disease management as well as your mood. Things like recovery yoga or low impact workouts can be helpful. But there will be times you do not have the energy to spare, or times you are in too much pain. Don't beat yourself up over it. It does no good to compare yourself to perfectly healthy people. Do what you can and build up slowly. There are weeks I hit the gym three times. There are months I don't make it at all. That's just the reality.

9) Plan your pregnancies carefully.

If you are a woman, and most of us with Lupus are, you have to be careful choosing birth control with the help of your doctors. Your pregnancies will be high risk, even if you have mild disease. If you have a clotting disorder, you will need to be medicated for that or risk losing the baby. Pregnancy can result in organ damage even if you didn't previously have organ threatening disease. I'm not saying you can't be a mom. I'm saying you need to plan it carefully with your doctors.

In addition, you may need more help postpartum or post-adoption than a healthy person. Your partner needs to be on board with that reality. Mommy cannot do it all.

10) Learn to say no.

You have to learn to say no to things, and to plan recovery time for things you know will wear you out. Save your energy to the things that matter most. Your friends will understand, or they weren't real friends. You don't need to help people move. You don't need to babysit everyone's kids and run the church raffle. You don't need to party every weekend. It is okay to say no.

That notwithstanding . . .

11) You can still do things.

I was diagnosed right around college graduation. I spent my senior year in doctor's offices and blood labs. I still graduated. I got a Master's degree. I got married and moved to California. I taught high school in the inner city. I became a Presbyterian elder and a clerk of session. We bought our first house. We adopted a son. I just published my first novel (buy it!!!!), then four more. I went to Spain, India, Japan, and Singapore.  

My life did not end with my diagnosis. Yours won't, either.  

You will have good days and bad days. You may have months you need a cane every day and years you don't touch it. You may go into remission. You may find the perfect medication for you. 

You can survive Lupus. You can even thrive with it. Your life is not over, and you are not alone.

A.M. Manay is a writer, mom through adoption, and Lupus survivor.  Follow her on Pinterest or Facebook.

If you like a fun read with vampires, fairies, werewolves, romance, and mortal danger, check out her novel, She Dies at the End, available on Amazon Kindle. If high fantasy is more your bag, try Hexborn.

Can I get that novel with soy milk?

I love to write and edit at Starbucks. I know it's a waste of money. I know I should prefer my local independent artisanal hipster fair trade coffee shop, man, but that's a fifteen minute drive and has questionable WiFi. There are few things I enjoy more than pulling out the laptop or tablet at the closest Starbucks, setting it up next to a caffeine and sugar delivery system, and getting down to work. So why do I love it so much?

1) I have a terrible sweet tooth

I love sugar. I love carbs. By a stroke of genetic luck, I'm still skinny. Of course, I also have Lupus, so maybe that wasn't really a winning ticket in the genetic lottery after all. Anyway, I try not to go too overboard (only two pumps of sweetener, please), but I do love a scone or chocolate croissant to go with my creativity. I had a green smoothie for breakfast, so it's cool, right?

2) Home is too distracting. Starbucks is just distracting enough.

Starbucks may be bustling, but there's no laundry to do there. No dishwasher to empty. No dinner to prep. No bills to pay. No garbage cans to roll to the curb. No children's torn clothes to mend. No floor to sweep. There is just me, the computer, my characters, and a bunch of strangers who won't bother me. The music and people coming and going are just the right amount of background stimulation for me.

3) My local Starbucks is the best

No, for real. Starbucks #6532 is the best one I've ever been to, and it's less than half a mile from my house. The drinks are always perfect. The people are super nice, and they are really good at their jobs. The place is always clean, including the bathrooms. The music is never too loud. The parking lot isn't too crazy. The WiFi always works. They've never poisoned my dairy allergic child. Pretty much the perfect Starbucks experience every time.

4) Seeing/Spying on my fellow humans

Being a stay-at-home mom can be isolating. So can being a writer. Thus, I find being around other adults energizing even if we're not interacting all that much. Also, people do an interesting variety of things at Starbucks: dates, job interviews, meetings, catching up with friends, snacks with the kids, etc. It's kind of fun to see what other people are up to, and it's all grist for the inspiration mill.

I suppose I will continue being a cog in the corporate machine and do a fair bit of my creating at the neighborhood Starbucks. I don't drink, smoke, or do drugs, so I guess a frappuccino and a petite vanilla scone or three isn't the end of the world.

Read my novel, She Dies at the End, available for on Amazon Kindle.

Five Life Lessons From Disneyland, In No Particular Order

We recently made our first family trip to Disneyland. It was, in the words of our five-year-old, "totally epic." I had a lot of time to mull things over while standing in line for tickets, standing in line for rides, standing in line to meet characters, standing in line to avoid standing in later lines, standing in line to eat, standing in line to pee, standing in lines for a bus to another line, etc. Here is a summary of my musings, and I won't even make you stand in line to read them.

1) Don't force your kids to do things they aren't ready for.

This applies to many areas of life, but Disneyland makes it uncomfortably obvious in the weeping, screaming faces of children mid-meltdown. There is no point in bringing a kid younger than five to Disneyland. You will pay a lot of money, and everyone will suffer. Between the skeletons freaking everywhere and the overpriced toys around every corner, you are well and truly screwed if your kid is not old enough to have some degree of control over his feelings.

This lesson applies to many areas of life. Perhaps a 3-year-old doesn't need tutoring or to be playing three sports, for example. Perhaps it's okay that my kid needs a nightlight, hasn't yet read War and Peace, and still wakes up with a wet pull-up in the morning. I'm pretty sure that by the time he leaves for college, he will possess both literacy and bladder control.

2) Churros are yummy.

Enough said.

3) A place that is fun can still be casually racist.

Tiana. Iridessa. The Black baby dolls singing "It's a Small World." There, I've listed all the Black characters I saw at Disneyland who aren't shooting poison arrows or wearing hats made of bananas -- and only the singing babies had curly hair.

Does this statement mean that I think everyone who works at Disney is a racist, and you can't go there ever again, and if you have fun there you're a terrible human being, and I don't want to be your friend anymore, and we should feel guilty for being born white? No.

Does this mean that I think white supremacy and white privilege are pervasive in our culture and I saw that in stark relief at Disneyland? Yes. Does it mean that it makes me sad that my Black/Indian kid sees very few people there who look like him? Yes. Do I think white people need to be more aware of and self-aware about these kinds of issues and be a part of fighting the good fight? Yes. 

4) Personal interaction makes a bigger impression than dazzling technology.

You know what my kid loved best at Disneyland? It wasn't the amazing rides, though Buzz Lightyear Astro Blasters was a big hit. It was meeting and conversing with Captain America and getting to fight Darth Vader in the Jedi Training Academy. He loved interacting with the characters and staff and playing pretend with the other kids on Pirate Island and in Toon Town. He loved telling his tales of adventure to anyone in earshot back at the hotel. He loved spending time with his parents and his birthmother and sharing his excitement with us. The joy was in the interaction and the relationships.

Kids don't need an expensive trip or pricey gadgets to make happy memories. They just need us and an adventure of their own making.

5) Good things come to those who wait.

We did a lot of waiting in line, as I may have mentioned earlier. My kiddo was a trooper. After every ride, I asked him if the wait was worth it. Every time, he said that it was. We never knew for sure while we were doing the waiting of course. We had our moments of doubt. Maybe Nemo will stay lost, we thought. Maybe all the animatronic children singing "It's a Small World" will come to life and kill us all in their first step to world domination. Maybe I'll barf on Star Tours. Okay, that last one is a bad example since it almost actually happened. The point is that in the end, generally, our perseverance was rewarded.

Good things come after a time of waiting. Good things can even come during a time of waiting.

This is a lesson we hear often in the church: look at Advent and Lent. But sometimes in our daily lives, we want everything to come so quickly.

This is a lesson I often struggle to remember as we wait (over 2 years so far this time around) to see if anyone out there will choose us to raise her child. It is a lesson I have to repeat to myself as I struggle to make progress writing my stories and getting them published in my very limited free time. It is a lesson I often forget when I get impatient with my health, when Lupus seems to be winning and my treatments seem to struggle to make any headway.

When I get impatient, I need to remember that when I look back at periods of my life spent waiting, those aren't bad memories. The journey still contained joy and growth and fun. I also need to remember that every time I've been seemingly stuck in an endless line, that every time the days have crawled by with little to show for them, when I got to the front of the line, the ride was still worth it: better, even, than Astro Blasters.