The ABC’s of Lupus. (Or, 26 Things About Lupus.)

A few months ago I stumbled across a post called “Fibromyalgia A to Z” and it struck me as a great way to quickly share lots of information about a chronic illness.  There are many symptoms and aspects of my illness that don’t necessarily find their way into my blog posts about lupus and this was certainly one of the more creative ways to share 26 of them with you.  I hope you learn something new about lupus from this list.

 

The ABC’s of Lupus. 

A is for attack.  Lupus makes your immune system attack your body – potentially any part of it.

B is for butterfly rash.  While not everyone with lupus experiences skin issues, such as a butterfly rash on the face, it’s quite obnoxious when it does happen.  I frequently have a butterfly rash (also called a malar rash) and it can be similar to having a sunburn.  It will sometimes get very red, hot, and feel like it is burning.  The butterfly rash is just one type of rash associated with lupus – some people get rashes of varying severity in different places all over their body.  For example, I also get sunburn-like rashes on my chest and neck when my lupus is active.

C is for chronic pain.  This is one of the most unfortunate things about lupus; there are so many different types of chronic pain that can occur.  I have had chronic muscle and joint pain for the past three years because of lupus.

D is for disability.  Lupus, if it is severe, is one of the conditions listed by the Social Security Administration in their manual as an automatic qualifier for social security disability benefits or supplemental security income.  (This doesn’t mean you’ll automatically be approved for benefits – rather, it means that lupus is already considered a disability.)  Even if you don’t need disability benefits, lupus is still a frequently disabling condition.  My lupus varies from day to day, but most of the time it severely limits my physical and mental abilities.

E is for expensive.  Lupus treatments and accommodations can be very expensive.  Most lupus warriors will meet their health insurance deductible and/or out of pocket maximum every year (especially if they are on a biologic).  Add in the cost of insurance premiums, lifestyle modifications (such as getting medical grade tinting on your vehicle or purchasing a wheelchair), supplemental medications not covered by insurance, high quality sunscreen for photosensitivity (which you will wear almost every day), heating pads or other pain relief devices – the list goes on and the total cost can quickly go into the tens of thousands.  You also have to factor in the potential loss of income.  I earned about a $50K salary before I had to stop working, and I can now count on an annual income of less than $5K from my freelance work.

F is for flare.  Sometimes people with lupus will almost feel normal because their symptoms are under control or absent for a period of time.  Periodically lupus will flare up, however, meaning that symptoms are mild to severe or even life-threatening.  A lupus flare usually requires a lot of extra medication and rest.  After living with the disease for a while, most lupus warriors can tell when they are about to experience a flare and can take steps to prevent it or reduce the severity.

G is for going to the doctor.  This is certainly of the more tedious things about lupus.  I have seen my rheumatologist almost every month since my diagnosis a year ago because I have not yet stabilized (and also because I am pregnant).  In 2017 I went to 62 doctor’s appointments and the majority of them were for lupus related reasons.

 

 

H is for hair loss.  Hair loss from lupus can occur during a flare or as a side effect of medication.  It’s not pretty and there’s not always a good solution, aside from stopping a medication or getting through a flare up.

I is for immunosuppressant.  Lupus is an autoimmune disease where your immune system attacks your own body.  This can be incredibly dangerous (and it’s actually the same immune response mechanism that can kill people with the flu).  For many people the overactive immune response of lupus can only be controlled with an immunosuppressant – an often scary type of drug that kills off your immune system and leaves you vulnerable to infections and acute illnesses.  People taking immunosuppressants have to be very careful about encountering germs, bacteria, sick people, and even live vaccines.  Despite all the risks, I’ve been taking a potent immunosuppressant for about eight months now and it still has not brought my lupus under control completely.

J is for joint problems.  I’ve already mentioned chronic joint pain, but that’s not all that can happen with lupus.  Joints can also become stiff and swollen, especially if you have lupus arthritis.  Occasionally people with lupus will experience permanent joint damage as a result of inflammation.  My joints become tender, swollen, painful, and/or stiff without much rhyme or reason.  It’s the worst early in the morning and late at night, and usually affects my neck, shoulders, fingers, wrists, elbows, hips, knees, ankles, and toes.  (So, pretty much most of my joints.)

K is for kidneys.  There are a few organs in the body that lupus likes to target, but the kidneys are probably its favorite.  When lupus attacks the kidneys it’s called lupus nephritis and it happens in up to 60% of people with lupus.  It’s one of the more serious complications because it can lead to kidney failure if it’s not adequately controlled.

L is for a life worth living.  Lupus can make life unbelievably difficult but life with lupus is still worthwhile.  It has forced me to slow down, figure out what is most important in my life, and focus on doing things that are meaningful and make me happy.  When all the negative things about lupus become overwhelming it helps to take a step back and think about the positive effects it’s had on my life.

M is for medications.  So. many. medications.  I ran the numbers and last year I took 17 prescription and 13 over the counter medications.  Some of them were temporary, such as antibiotics and anti-nausea meds, but the majority were long term.

 

 

N is for “no”.  Unfortunately, lupus means saying no a lot more often.  It’s easy for me to say no when I’m exhausted or it’s an activity that I didn’t really want to do in the first place, but sometimes having to say no leaves me a bit heartbroken.  I miss going out and saying yes to things that I enjoy doing.

O is for overwhelming.  When you are first learning about lupus it is absolutely overwhelming to realize you have such a serious and complex disease.  Even when you get a grip on what lupus is all about, you are still overwhelmed by the symptoms, appointments, complications, medications, and all the restrictions that it can put on your life.

P is for photosensitivity.  At least two thirds of people with lupus are estimated to experience photosensitivity, which is an unusually strong reaction to UV light.  This means they may have an increase in lupus symptoms after UV light exposure from the sun or even artificial lights.  They may have a lupus flare after prolonged or unprotected exposure; some people will even experience internal damage after exposure without obvious physical symptoms.

I have become extremely sensitive to UV light from fluorescent lights, to the point where I have to put on sunscreen just to step inside my doctor’s office (where there are fluorescent lights).  Going to big box stores, such as Wal-mart, that have uncovered fluorescent lighting has made me so sick that I avoid them at all costs (which is surprisingly difficult).  I put on sunscreen every time I step outside – no matter how cloudy – or inside depending on the interior lighting, reapply every two hours, and limit my time in the sun as much as possible.

Oh, and I also wear a slightly ridiculous sun hat most of the time.

 

 

Q is for quirks. People might think that you’ve developed quirks when you apply sunscreen in the winter when you’re in a classroom.  Or if you start to use terms they aren’t familiar with, like lupie (a person with lupus).  You’ll definitely appear quirky if you decide to wear a mask in certain situations since you are immunocompromised.  Waiters may think you are quirky (or just annoying) when you ask to be seated away from the window at a restaurant.  You will just have to learn to embrace your lupus quirks.

R is for records.  It’s important to keep detailed records when you have a chronic illness.  This might mean using an app to track your day to day symptoms or following up with your doctor to make sure you have a copy of all your medical records and lab results.  You’ll want to keep a record of the medications you’re currently taking and what you have taken in the past.  And, as we’ve recently learned, recording all your medical expenses and organizing receipts may be especially important when tax season arrives.

S is for support.  You will need an excellent support system with lupus.  Look for support from your family, friends, and coworkers, and don’t allow non-supportive people to play a large role in your life.  One of the best things I did post-diagnosis was join a lupus support group.

 

 

I received so many resources and SO MUCH LOVE at the Central Charlotte Lupus Support Group that I hardly know what to do with myself. It’s so good to know that I’m not alone. 💜 . . Thank you @lupusnc!

A post shared by Ava Meena (@mymeenalife) on Feb 8, 2017 at 1:18pm PST

 

T is for taking care of yourself.  It can be easy to let self-care fall by the wayside when you’re busy or fatigued, but it’s really critical when fighting a disease like lupus.  You’ve got to make yourself your first priority so that you can stay as healthy as possible.

U is for unique.  People in lupus circles often say that if you had 100 lupus patients in a room each one would have a different experience with the disease.  This is probably pretty accurate, because lupus can attack anything in the body and so it will manifest in different ways in each person.  This is part of the reason why lupus can be so difficult to diagnose – since no two cases are exactly the same.  Sure, there are similarities, but not nearly as much as might be found in other diseases.

V is for very patient.  You need to be very patient when you’re seeking a diagnosis (the average time for a lupus diagnosis is five years), when you’re waiting for a treatment to work (or not work so that you can move on), and when you’re listening to people who give you unsolicited medical advice.  (You may discover that suddenly everyone in your life knows about lupus and also knows what you need to do to “fix” it.)

W is for women.  Lupus disproportionately affects women, with 90% of people with lupus being women.  It’s thought that lupus might be related to estrogen levels (since some women experience their first flare during or shortly after pregnancy when estrogen levels are higher) or that women simply have more of the genes that make you more susceptible to lupus.

X is for exhaustion.  (Okay, I cheated a bit on that one – but x is a hard letter!)  Lupus fatigue can be unreal.  It’s hard to have energy for regular activities when your body is using its energy reserves to attack itself.  I usually feel tired every day, and when I try to be physically active I hit with a wall of exhaustion after the first hour or two.  Being tired will vary according to disease activity and your schedule, but it can reach debilitating, I-literally-cannot-get-off-the-couch levels.

Y is for yearning.  Since my diagnosis I’ve spent a lot of time yearning.  I’ve longed for an easier life.  I’ve wished for (and tried really hard to find) a better rheumatologist.  I’ve wanted to spend less time at home in isolation.  Some of these things I can work toward and change, but other yearnings are just part of life with lupus that I will have to learn to accept.

Z is for zoning out. Cognitive dysfunction is probably one of the lesser known things about lupus.  Also called lupus fog or brain fog, the cognitive impairments that accompany lupus are frustrating and inconvenient.  They can manifest as confusion, difficulty expressing yourself, or concentration and memory problems.  In my post, 10 Things I Didn’t Realize Would Happen After I Was Diagnosed with Lupus, I wrote the following about brain fog:

I regularly experience brain fog, or cognitive impairments, that hinders my concentration and memory to the extent that I can’t work, drive, or express myself.  I spend a lot of time being confused because I can’t think clearly.  Sometimes I have to ask my husband something five times before I get it right.  The weight of trying to function with brain fog can be so heavy that I would rather retreat into silence.  It leaves me feeling uneasy, as if I’ve left behind something essential but I haven’t the slightest clue what it could be.

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Thanks for reading!

Did you learn something new about lupus?  Which letter did you relate to the most?

The ABC’s of #Lupus. (Or, 26 Things About Lupus.) Share on X

Featured photo and first photo via Pixabay licensed under CC0; first photo modified by My Meena Life.