Tuesday, August 4, 2015

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 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) 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 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.

5) 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.

5) 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.

6) 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.

7) 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 . . .

8) 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!!!!).  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 twitter (@ammanay) or Facebook (facebook.com/ammanaywrites).
If you like a fun read with vampires, fairies, werewolves, romance, and mortal danger, check out her new novel, She Dies at the End, available on Amazon Kindle.


  1. Thank you for putting this out there. It is so important for people t remember to listen to their bodies. We all know our bodies very well. If you go to a doctor who dismisses your symptoms out of hand, find a doctor who will listen. Taking the time to truly care for yourself is critical. I have the possibility of lupus, I don't have positive blood test results for lupus, but I have all of the signs and symptoms. It is frustrating and scary. I have thought I have been losing my mind. I am lucky enough to have an amazing support system, including this amazing woman, A. M. Manay, and I am so grateful.

  2. I have been dealing with this evil disease called LUPUS for almost 40 years. I had a wonderful Dr. Rose Tse for the better part of 27 years. She was so wonderful. My Drs didn't know how to deal with a pregnancy and Lupus. I was just about in readmission from all symtoms during my second pregnancy. I truly believe that was well in my second pregnant until I nursed my youngest for 15 th.month.
    This is a wonderful blog, To write about your story A.M. MANAY the to help others is truly Gods Work. I hope to pay it forward. Love, Aunt Margie