what I’ve learned and how I feel about it

We are all just a car crash,
a diagnosis,
an unexpected phone call,
a newfound love
or a broken heart away
from becoming a
completely
different
person

How beautifully fragile are
we that so many things can
take but a moment
to alter
who
we are for
forever?
-Samuel Decker Thompson

It’s been one week since I’ve heard the three words– ‘you have lupus‘.

I’ve done a bit of research. Not too much because I don’t want to get overwhelmed with all that could–but most likely won’t–happen. Mostly I’ve stuck to researching the medication I’m taking, the results of my bloodwork (and what it means) and the symptoms I’m experiencing.

I read a good way to describe what is happening with lupus somewhere and I’ll share it here.

Imagine the immune system as a fort in a city. Inside the fort are thousands and thousands of soldiers who sit, waiting to go outside to fight evil and destroy the enemy. Normally the immune system (the fort) produces antibodies (the soldiers) and cells (the tanks) that fight the antigens (the enemies), such as bacteria, viruses and other germs throughout the body (the city).

In lupus there is a malfunction and for some reason, there are soldiers inside the fort who try to destroy the city and perhaps the fort itself. In lupus, normal, healthy tissue is attacked by the increased amount of antibodies (the deranged soldiers). It is almost as if the soldiers have lost their ability to control their behaviour. They run rampant, and they attack whenever it is convenient for them.

For as long as I can remember, I’ve felt like I didn’t belong. Like I was some sort of impostor and needed to destroy part of who I am. Well, as it turns out, even my own body doesn’t think I belong and wants to attack itself.

Anyways, I’ve read some interesting things through my research. I’ll share with you what I’ve found and how it relates, or doesn’t, to my own situation.

These are The Things I Know

Lupus is short for systemic lupus erythematosus (SLE). Individuals who are afflicted with this illness can suffer a myriad of varying manifestations that can affect almost any part of the body. The manifestations can be quite minimal or extremely severe and even life threatening, and they can appear and disappear with unpredictability, lasting anywhere from a few days to several months or more.

Those with the illness frequently go for months or even years while physicians vainly try to make the diagnosis, and it is not uncommon, especially in the milder cases, for such patients to be labelled neurotics or chronic complainers.

Even after the diagnosis, you have to live with the knowledge that the illness is not yet curable, and though treatment has improved dramatically, it is still far from ideal since the drugs used in many cases have significant untoward side effects.

The pain of lupus comes and goes because it is a disease that is cyclical in nature (like a roller coaster with ups and downs). Sometimes you’ll feel much better, but other times symptoms may increase. When you’re feeling good, there is no way of knowing how long it will be until another flare occurs (every time I hear that word I think of The Maze Runner Scorch Trials and imagine these infected zombie-like people chasing me). Flares can be caused any time there is some sort of stress placed on the body (excessive fatigue, sunburn, emotional difficulties, infections, medications, injury or surgery are some examples). It’s different for everyone and you need to learn what is a trigger for you.

Diagnostic Criteria

In order to be diagnosed with lupus, it is necessary to meet at least four of the following eleven criteria:

1. Facial redness or a rash on the face (called the malar or butterfly rash). It may be on both sides of the face or just on one side. It is usually flat. My face (cheeks mostly) has always been red–sometimes moreso than at other times. It’s worse after I go in the sun and I always thought it was just because I have fair skin. Thankfully, it’s very minor and can be lessened by wearing moisturizer with SPF 30, using a little bit of makeup (I hate makeup so I don’t wear much) and by staying out of the sun as much as possible. 

2. A more extensive skin problem that may show as a rash, blotches or red scaly lesions. These thick, raised patches are shaped somewhat like disks and may occur anywhere on the body. This was a big thing for me. What I thought was just a rash went from a possible cancer diagnosis to me being tested, and then diagnosed, with lupus.

3. Photosensitivity–experiencing some kind of harmful physiological reaction to sunlight (more severe than a sunburn). I’ve always tried to avoid the sun as much as possible but I have this one for sure. I find the sun hurts my bones and makes me feel quite awful so I sit under an umbrella and often in the shade. Even a little bit of sun on certain areas (neck, shoulders, chest) feels as though I am being poked with burning matches–it stings and hurts. I wear SPF 60 on exposed areas and cover as much as possible when in the sun. If it feels too bright for my eyes they will start to burn, it’s hard to focus and I will feel desperate to close them. I wear my sunglasses as much as possible.

4. Ulcers in either the mouth or nose, or throat. I get these very rarely in my mouth, but I do get them in my nose (gross, right?!?!). Thankfully they aren’t too painful.

5. Arthritis-like symptoms in two or more joints. I have been dealing with joint pain for at least 20 years. It occurs on both sides of my body in the same joints, which includes my wrists, fingers, ankles and feet. My left hip also gives me a lot of pain especially at night. 

6. Either pericarditis (heart inflammation) or pleurisy (lungs). Nopes, not me.

7. Kidney problems. Nopes, not me. Although the presence of anti-dsDNA (which I have) indicates a greater risk of lupus nephritis, a kidney inflammation that occurs with lupus. 

8. A neurological disorder, either convulsions or psychotic behaviour, without it being caused by drugs or a metabolic problem. Nopes, not me.

9. One or more blood disorders. To my knowledge I do not have this problem.

10. An immunologic disorder (antibodies to double stranded DNA (anti-dsDNA), antibodies to Sm, or antibodies to cardiolipin). I am positive for anti-dsDNA. The anti-dsDNA antibody test is a very specific test for lupus because those antibodies aren’t found in any other autoimmune disorders other than lupus. 

11. A positive ANA (antinuclear antibodies). I am one of the rare people who tested negative for this (although it might change at any time) but because of everything else, still ended up with a diagnosis. 

Outside of the diagnostic criteria my rheumatologist said the following symptoms that I experience are also part of the disease:

-I get hives and itchy skin A LOT. If I don’t take Reactine pretty much daily, it’s awful

-my fingers get really cold even when the rest of me feels warm and when it’s hot out. If I have to touch/hold cold things (food from freezer, cold water etc.) the pain is quite severe and can at times almost makes me cry (Raynaud’s phenomenon can occur with lupus)

– low levels of Vitamin B12 (while anyone can have low levels, autoimmune patients are especially susceptible. A B12 deficiency is almost a given for people with pernicious anemia, Crohn’s disease, Graves’ disease and lupus).

– horrible fatigue (which I always thought was because I’m a working single mom dealing with other things, but is actually a big symptom of the disease)

– a positive test for Ribonucleoprotein (RNP) or Anti-RNP antibodies (antibodies to RNP occur in approximately 30-50% of patients with lupus)

So for me, I have 6 of the 11 criteria plus all of these other symptoms which my doctor believes are associated with lupus.

How it’s Treated

The treatments you may have to take for lupus may vary from time to time and will depend on your symptoms – including how mild or severe they are – and which parts of your body are affected.

The main conventional treatments include the following:

1. Anti-inflammatories–Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen, naproxen and diclofenac are used to relieve joint and muscle pain in people with lupus. I was presribed a drug called Arthrotec which contains both diclofenac and misoprostol by my old doctor because of joint pain and it worked quite well for a few years. Unfortunately it causes a higher risk for heart attacks and strokes and cannot be taken when you are pregnant (or planning on becoming pregnant) so I had to be off of it for at least a year before having children. My current doctor would not put me back on it as he felt the risks were too high. So, unfortunately, NSAIDs don’t work very well for me anymore.

2. Antimalarials–A drug called hydroxychloroquine (Plaquenil), which was originally developed as a treatment for malaria, can be used to help treat joint pain, skin problems and tiredness. This is what I’m taking now and I hope to see results soon (although it can take 3-6 months). If it’s unsuccessful after 6 months, we escalate to something stronger (which I have convinced myself won’t happen).

3. Corticosteroids–Steroid creams may be useful for lupus skin rashes. Pills are only usually prescribed in severe cases to help treat inflammation quickly and can sometimes also be used as a long-term treatment for kidney inflammation or severe blood problems, or in the short term to treat lupus complications such as pleurisy or pericarditis. However, if taken for long periods they can cause side effects such as weight gain, high blood pressure, thinning of the skin and thinning of the bones (osteoporosis). I’ve been on prednisone once and I don’t want to go on it ever again, so hopefully I can avoid it. I do use a moderately strong steroid cream for any rashes and have had injections of steroids which, while quite painful, were extremely helpful. 

4. Immunosuppressants–Drugs used to dampen down an overactive immune system are sometimes used alongside corticosteroids and can help reduce the damage your immune system causes when it attacks healthy tissues. Some of the most commonly prescribed immunosuppressants are methotrexate, azathioprine and cyclophosphamide. Hopefully, I’ll never have to take these.

5. Biological therapies–These days newer drugs called rituximab and belimumab are sometimes prescribed for people with severe lupus. These are known as biological therapies, and they work by reducing the activity of particular immune system cells that produce the harmful autoantibodies that cause lupus symptoms. I hope to never, ever have to take any of these.

The goals of treatment are to relieve symptoms, prevent major organ deterioration, and allow the patient to live as normal life as possible.

What I Feel

So, how do I feel about having lupus?

On top of everything else that’s been happening it feels like a lot but, for the most part, I think I’m doing okay.

Maybe it’s a little bit of denial.

I still don’t talk a whole lot about it with anyone–I think I’ve told 5 people so far–and aside from my mother, nobody else in my family knows about it. Part of me doesn’t feel like it’s necessary to tell everyone. I figure when the time is right, I’ll let people in on the news. It can go into remission, so in a year or so, maybe I’ll feel really well. Maybe I won’t need to be on medication forever (I hope not) but I’m trying not to look too far into the future.

There is a part of me that feels like the next time I go to the doctor they’re going to say they got it wrong and that I don’t really have lupus but rather I’m just one of those patients who they see that likes to complain about things that aren’t real. Part of me still feels like ‘it’s all in my head‘.

I’m thinking my family doctor probably will get the report this week from the rheumatologist. I’m not sure if his office will call me or not–when I saw him last time, he said he wanted to see me once he got the report–but I feel like he’s all over the place sometimes. If I don’t hear from him, I may call before I go for bloodwork in October to see if he wants a copy of the report sent to him as well. I don’t feel like he’s going to add to the discussion very much and part of me is still a bit upset that he totally blew me off a couple of months ago.

I see the dermatologist again in November for a follow-up. There is something about him that I like (he kind of reminds me of Bilbo Baggins). I’ve since learned that his other specialty is internal medicine, so that’s probably why he even thought to test for lupus after looking at my rash. He takes his time with people and never seems rushed (that’s probably why it takes 3 hours to see him from the actual time of your appointment). I suppose it makes me feel like he’ll explain everything that is happening in words that I can understand and it will all sink in for me (it’s hard to remember most of what was said at my appointment last week). I just hope that he keeps me for a little while longer but I’m not so sure now that the rash is currently taken care of.

It feels like a lot of appointments with a lot of different people. I don’t like a lot of appointments and I feel like I’m always seeing someone for something and always starting the story at the beginning again. In many ways it just feels like it adds to the exhaustion of it all. I think once things settle down a bit, it’ll be more manageable, but right now, I feel like I’m not doing so well at keeping up and remembering to do things.

Other than that, I guess for now I’m just going to learn what I can. If certain things need changing, I’ll have to figure out a way to do it. I don’t think everything will have to change though.

I can still go to the beach with the boys in the summer but I just have to be extra careful (more than I already am) and protect myself from the sun. I have to learn that it’s okay to say no, when I’m just too tired to do things or when my joints are too sore instead of pushing through it like I’ve always done. I have to learn that it’s okay to take time off of work if I’m not mentally or physically okay to be there. I told my boss I was behind (I didn’t say why) and he said he wasn’t worried about it, so I’ll do what I can and if I can’t do it, I’ll have to talk to him about it.

Of course, I have T as well, who will listen to me whine and complain about how unfair it all is and how it should be someone else instead of me. He always tells me he doesn’t mind. He says that I can feel however I want to feel and there isn’t anything wrong with that. Have I ever mentioned that I love my T? I’m pretty sure it’s only been a hundred-million times. 😉