What is having Lupus like?

First of all let me be clear – my diagnosis was 'suspected Lupus'. I also have the beginning of Rheumatoid Arthritis. A mini-stroke last year ended up with a semi-confirmation of the Lupus with an abnormal ANA. So I can't tell anyone what it is like living with the numerous doctor appointments as I haven't been able to locate a rheumatologist in my new county. I'm sure there is one here and tomorrow morning I have a call scheduled with my insurance company to help locate one.

Lupus is a chronic illness that causes the body's immune system to attack the host – that's you or me. 
Some common symptoms are a butterfly shaped rash on the face (absent in many cases including mine), severe fatigue, joint pain, memory problems (called Lupus fog), and a general feeling of unease (malaise). When I have a fever or drink alcohol the rash or redness shows up on my face. 

Because the symptoms are so general, Lupus can be confused with other illness. It takes many tests to come to a concrete diagnosis for some women. For others it is so obvious their doctors only need confirmation. I'm one of the lucky ones.

For over a year I had been having trouble with the joints in my hand.
I assumed it was RA, like my mom had. Many of RA's symptoms are the same as Lupus. One day I found that I could barely move. I had no energy. Trying to type was ridiculously tiring. Come on, I could barely lift my fingers – what was my body doing?

I went to the emergency room because that type of low energy was not normal. No way. I have 6 children, 5 of them are under 12. My youngest was not even a year old at that time. I talked to the doctor on schedule, explained all of the weird symptoms I had in the recent months. She asked - “Did your mother or other immediate female relatives ever have a diagnosis of Lupus?”

Uh...not that I knew of. A few hours later I left the ER with a prescription for 800 mg ibuprofen (for my joints) and orders to find a rhuematologist. I never did find one, we moved not long after that. No insurance then, either. I called my grandmother and she told me about several women in our family with it. My aunt on my bio-father's side of the family said Lupus runs in that side, too.

Now I have insurance, so tomorrow's call is important. Up until now I've been dealing with this illness in the only way I could – alternative medicine. Herbs, vitamins, and my own high tolerance for pain. No matter how much tolerance you have nothing can stop this disease from breaking you down. I like to joke about how nothing can kick my ass except me, but I'm at the point where I need to throw in the towel.

I need a doctor.
 I know this. There's no solid documentation of how long you can live with untreated Lupus that I know of. Each flare – periods of time when the body is busy attacking itself – is breaks me further.

My husband helps around the house. In fact, for the past week he's done most of everything. I feel guilty even though he tells me not to. Who wouldn't? Even though it is hard to explain to people just how tired you are after doing, well, nothing. Dragging your butt out of bed is like climbing a cliff freestyle.

So, what IS it like? 
How can I describe the feeling to someone that doesn't have it and is trying to understand how a friend with this stupid disease feels? I don't like the 'Spoon Theory', though it's sort of right.

Imagine waking up in the morning with your bed at the bottom of a mountain. You must climb out of bed and a ¼ of the way up that hillside before taking care of your morning routine. The entire time you must wear gloves filled with studs that poke your knuckles.

Before you can have lunch you must climb another ¼. If you're in a full blown flare you might just forget to eat. You may decide to skip the meal because nothing tastes good, your stomach hurts, or there is a nasty metallic taste in your mouth again.

Dinner? Maybe. You're halfway up the mountain already. If you happen to remember to get dinner started it's going to take another ¼ of that climb to get dinner made.

Bedtime – ¾ of the way up the mountain you realize you just don't have the equipment to finish the climb. Time to make camp (in other words, fall into bed and try not to cry yourself to sleep).

Those of us with children find that our climbs are even steeper. We never get to climb ¼ of the way at a time. We must climb a meandering spiral path. Sometimes we end up staring at the start of the path, wondering what happened to the day.

I haven't even touched the tip of the symptom/fare iceberg. Each of us have different symptoms and reactions. Our bodies do some seriously weird shit.

I can tell you that most Lupus sufferers don't want your pity. 
They just want you to understand that sometimes it really is hard to get things done. Moving across the room can be like running a marathon through molasses. We get weird aches and pains. Sometimes we shake when we walk or we might need an arm to hold on to. We don't want to use a cane, but we might need it.

Don't get upset if your friend with Lupus can't go to the mall or needs to rest a lot when you do go out. We don't want this. Most of us would give anything to go back to how we were. On our good days many of us try to make up for the ones we 'lost' during a flare. Do us a favor and don't insist on helping us over-extend our bodies...we're pretty good at that already.