So, last I wrote about my health was about a month ago. And I was going to go see a doctor in just under three weeks to get the results from a crap ton of labs and x-rays (which will reflect very painfully on the wallet). I was expecting to get bad news and I reallygenuinely thought I was ready to hear anything the doctor could say to me. I thought I was doing okay. Bad stuff was coming, I could handle it.

Wrong-o bong-o, Josephine.

When, on August 13th (gosh, that does not seem like only two weeks ago), I went to the doctor, I got the news I was least expecting: I have lupus.

I’m pretty sure my ears are still ringing after hearing my world crash in on itself like that.

I can’t fault the doctor. He said in the original appointment that he thought it was lupus. I just didn’t believe it was. I thought it was RA or that connective tissue disease he mentioned. I really didn’t think it was lupus. Even so, I thought I had prepared myself to hear whatever he had to say – most or least expected – and clearly I hadn’t. I was numb. In shock. I called parents and The Surprise to let them know what the diagnosis was, but I was on auto-pilot.

I drove myself back to work and the closer I got, the more I felt like I was about to panic. I had just heard life-altering news and I was scared. I’m proud of myself – I was the first to make the House joke – but I also know I had limits and I ran head-long into those limits that day. People, I wept. Openly. I don’t weep. I trickle. Occasionally, I dribble. But I do. not. weep. Yet, that day I could not hold back the tears, no matter how hard I tried. I was done.

I took a couple days off work to get my head back in the game. Frankly, I wanted to take longer. Maybe I should have, who knows? All I know is, I’m doing my best to move forward. And, in this context, moving forward has meant not thinking about itIf I think about it, it’s too much.

So, now that I’ve had two weeks to process, I’m making myself do this because I need to practice thinking about it. I knew a young lady who suffered significant injuries to her left foot in a severely traumatic car crash. She had skin grafts and all sorts of primitive-seeming surgeries on her foot as a result. One day, her doctor and the nurses came in to change the wrapping and she, as she had always done, looked away. The doctor said, “No. Look at it. That’s your foot and the faster you acknowledge that, the better.”

Wulp, this is my foot. And it’s time to acknowledge it. I have lupus. And I am TERRIFIED.

I’ll get to why I’m scared in a bit. First, I want to talk about what YOU can do. I know that’s one of the first questions many of you have asked, and its one of the easiest to answer: not much. Lupus makes everyone feel helpless – patients and family/friends of patients alike. This is because it’s just not an obvious disease. One of the first things we (my mom, dad, and I) read about lupus was that it was a disease that was hard on the friends and family because they wouldn’t be able to see it. Lupus tends to manifest in quiet, small, very inward ways, rather than in a recognizable, outward set of symptoms. People with lupus don’t *look* sick. I have already experienced this in the two weeks since my diagnosis. This is one of the most important things for you, my friends, to know: I will not always *look* sick, but believe me when I say I am.

Another thing you can do – for both me and yourself – is get familiar with the Spoon Theory. I used this before I got my diagnosis, both as a language to describe my mental state or physical exhaustion (which we now know is a side effect of the lupus) and as a common language my sister and I could use in regards to health. We both have chronic illnesses. With those illnesses come limits that we need to be mindful of and honor or we won’t make it through the next day. This is the BEST, most accurate way we’ve found to communicate when we’ve reached/need to avoid reaching those limits. If I (or my sister) tell you that I have no spoons left to do something I’ve expressed interest in doing, listen. It’s not that I don’t want to do it or that I’m merely tired. It’s that I have completely run out of any and all physical/mental/emotional stamina that I might have and I need to take the time to restore it. Running myself into the ground isn’t just counter-productive; it is actively dangerous.

Frankly, I recommend everyone at least become familiar with the Spoon Theory because everyone has limits. And maybe not everyone has the same limits, but this way you can communicate, concisely and clearly, when you have reached yours. Still, if the Spoon Theory doesn’t work for you, that’s fine. But understand that that is what I will be using to communicate my health status.

The last thing you can do for me is NOT ask how I’m doing. There is no question more annoying than that. Why? Because it makes me think about how CRAPPY I feel and makes me talk about it with someone else, which can be pretty tiring. That question brings my carefully directed concentration in a direction that just leads to dwelling on pain and exhaustion and not on productive things. If you want to know how I’m doing, ask about my day or my wedding plans or my work – about actual things in my life. Let me bring up my health. Once I’ve brought it onto the playing field, it’s fair game – until I say I can’t talk about it anymore. Only I know if I have the spoons to talk about my health with someone else, so while I appreciate all the love and care that is in your inquiry after my health, please don’t force me to talk about it if I’m not ready.

And now onto treatment: I’m on a medication that I take twice a day. I will likely be on medication for the rest of my life. I know it shouldn’t, but after working so hard to get off the drugs for my Bi-Polar, this feels like a set back. I’m not anti-medication, I take what I need when I need it. I just don’t like needing medication all the time. This particular medication is used – in much larger doses – to treat malaria. How they discovered that small doses treat lupus is BEYOND me, but I can be grateful for that particular medical mystery.

I do not know if it’s working. I won’t know for at least another two weeks. This particular medicine does not reach noticeable amounts of effectiveness until one month taking it and it takes another two months to reach peak effectiveness. That means I won’t know if its the right medicine for me until right around when I get married (in fact, three months exactly on the day I get married). Ugh. A week and a half before the wedding, I’ll go see my doctor and talk with him. If it seems to be working, great. If not, I’ll probably end up switching medicines right before I get married. Please, please, please pray that this medicine is effective. Switching medicines (or, more accurately, side-effects of medicines) is a really frightening process.

The good news is, I do know I’m not allergic to the medication. One of the exceptionally awful things about lupus is a propensity to react to things (meds, the sun, a random encounter with a scent or lotion) with rashes. Lots and lots of rashes. So, for the first few days, we kept an eye out for rashes. There haven’t been any. I’m in the clear. It also is fairly non-toxic, so if pregnancy is something I feel up to doing physically, if my mental health is in a good place, and if this medication is effective for me, I still have the option to bear children. That’s a lot of ifs, but it’s also better than nothing. That being said, the medication can cause brown spots to form on the back of the eye, so I have to be diligent about my yearly check up with the optometrist. The chances are about 1 in 10,000, so not so bad, but just one more thing I get to worry about. (Are you starting to see why “How are you doing?” is actually a really complicated, scary, difficult question? I hope so.)

And now, on to the lupus itself. (Yup, this is my life. All that is just window dressing before the real show.) Apparently, one of the biggest concerns is kidney function. Lupus can attack kidneys with the best of them. Right now, my kidneys are doing GREAT. This is excellent news. I did ‘soft pass’ on the RA test again, so it looks like my lupus will continue affecting my joints the most. However this does not mean I won’t have other symptoms (read on, MacDuff, for the others). I haven’t had any joint flares for a few weeks, so hopefully that pattern will continue until the meds kick in so I can avoid flares in general. They’re not pleasant. 

I’ve currently got a couple random rashes (that I thought were Just Part of Life and How Skin Behaved) that should recede once the meds kick in. Lupus is characterized by a butterfly-shaped rash on the face and, as many of you know, my cheeks have always been in high color. Upon inspection, the line of that rash does, indeed, imitate the wings of a butterfly. Hey, look at that!

That’s actually been one of the really positive parts of the diagnosis: a lot of things that I thought were Just Part of Life have been given a context I did not know I was missing. I’ve struggled with intense fatigue since I graduated from college, right around the time I was first diagnosed as pre-arthritic. Now I know why. That’s what I’m most looking forward to as the meds kick in: getting energy back. Now, it might be a while and I will likely have some lifestyle changes I need to do, but just knowing I have lupus has given me information I NEED to be able to combat this persistent fatigue. I had almost gotten used to life like this. It’s good to know I don’t HAVE to be used to it. Also, I got pretty freaked out a few years ago when my hair started falling out like gang busters. My dermatologist ran some tests, but apparently not tests for lupus. (No surprise. Who jumps straight to lupus?) Because my hormones and thyroid were fine, he told me it was probably just a normal hair loss due to a significant loss in my body weight. But, when my weight loss leveled out and my body normalized, my hair loss did not. It continued to come out in large amounts. I would run my fingers through my hair and have chunks come out from that simple motion. It was something that scared me quite a bit, but that I was told was normal, so I had to squash the fear into the back part of my brain where it could live but wouldn’t intrude on my daily life in any significant way.

To those of you who read that and said, “Wow, that sounds unhealthy.” You’re right. It is. It was also the only way I could keep moving forward because my doctor said that this was normal. It was Just Part of Life. For those of you who read that and said, “Wow, that sounds like a coping mechanism trauma survivors use.” You’re right. It is. It was something I learned when I was dealing with some of the issues that contributed to my Bi-Polar. It’s not the best way to deal with scary things, but often it is the one I default to because it is a habit. Having the lupus diagnosis is helping to break the repression cycle, as I’m no longer being told I’m imagining things, but it will be a process.

Now, on to why this is still Oh So Scary for me. I recognize the positives in having a diagnosis that gives me so much more information, that helps me realize I’m NOT imagining things about my health, that puts my aggressively poor immune system into a greater context, and that has lead to treatment of these issues. These are very good things. My mind is at a much greater rest than it ever was. HOWEVER, the diagnosis also brings with it a whole host of challenges. I mentioned the side-effects of the medicine and the worries about kidney function. Those are fairly easy to deal with: take blood regularly, make sure I see the right doctors every year, etc. What isn’t easy to deal with is the vast and varied unknowns.

Do you know why House always said, “It’s never lupus!”? Because it almost never is, but also because there are so many ways that lupus presents that it ALWAYS has to be ruled out. I know how my lupus is presenting now: intense fatigue, joint aches, hair loss. I don’t know how my lupus will present tomorrow. No clue. And because the presentation of lupus is so unique and individual to each patient, I have no idea how it could present. I will be on a constant alert for the rest of my life, watching for new symptoms. That’s exhausting to think about right now. Eventually, I’ll get used to it. It will be Just Part of Life. But right now? That’s scary.

The hair falling out is still pretty scary. I’ve never been particularly vain about my hair. I’ve dyed it and chopped it, not caring if the result was so bad I had to shave it all off. I love having my hair, but I could also easily see a world without it, so long as it was my choice. Possibly not having that choice makes me feel very out of control. Also, seeing my hair fall out like that when I brush it (and even when I’m not brushing it) is a constant, ever-present reminder that I Am Sick. Broken. Unwell. That’s not easy. It’s gotten to the point that I don’t brush my hair every day anymore. I’ll consider myself in a good place when I can do that again.

I’m terrified of losing the use of my hands. And no, I don’t mean that they’ll be paralyzed. But right now, I have a lot of functional mobility in my hands that I use ALL THE TIME. My form of release and relaxation is crafting. Many of you have received handmade cards and gifts from me. Paper crafts, cloth craft, yarn craft, paintings, drawings, writing – these are all things I do to take care of myself AND to show you I love you. The thought of losing the ability to take care of myself and show love to others like this is intensely frightening. Every time I pick up a project, I wonder if this is the last one I’ll be able to do. It’s made crafting less restorative than it used to be and I resent the hell out of that. BUT, I don’t think this is permanent. Once having lupus becomes a background part of my mental landscape, I think I’ll be able to find that peace and rest in creation again, rather than a dread at the day it might end.

Remember in old animated films how you ALWAYS KNEW which book was going to be taken off the shelf or which supposedly-lifeless object was going to become animate because the painted background and animated foreground styles were so disparate? That’s a lot what my mental landscape feels like right now. LUPUS sticks out like a sore thumb. Eventually, it will transition into the painted background, just as my Bi-Polar has. But, for now, it’s right up front and scares the ever-living shit out of me. If you do accidentally ask me, “How are you doing?” please understand when I don’t reply. Or even reply, “How do you think I’m doing?”

I’m not doing so great, but I’m not drowning yet. It’s going to take time to get to the point that I’m doing any different than that. It’s going to take even more time to get to a mere “okay.” And all of us, you and especially me, are going to have to be okay with that.

For now.