Curse You, Madam Butterfly!

Curse You, Madam Butterfly!

An illustration of Madam Butterfly – aka the butterfly rash on a lupus patient’s face…

In times of stress like I’ve dealt with this week the scarlet butterfly alights on across my nose and cheeks, filling my sinus cavity and skin with blood and fluid until it bursts through my skin leaving an unsightly oily rash and scabs. It makes me feel…undateable, unlikeable, an object of other people’s pity, concern, aversion and curiosity. It’s not enough to be physically painful; it sits on my face like the elephant in the room just trumpeting with all its strength for someone to break the tension by acknowledging it.

I look back on my charitable event and feel guilty for Batman, because he was a nice boy and we had dated for about six weeks and I wanted so desperately to be attracted to him because he treated me well and was willing to spend four hours outdoors in the 92 degree heat kneeling and standing to take pictures with kids in spite of a horrific case of rheumatoid arthritis he’d had since the age of five. I never said anything about it, but I secretly could not stop looking at how the RA had deformed the shape of his fingers and hands and wondering if my lupus would do that to me over the next thirty years. It was really such a small flaw in comparison to the man he was, and I wished that I had been brave enough to not let it bother me, as I hope someone will one day overlook it when it happens to me.

I had been learning to cope, doing pretty well keeping Madam Butterfly at bay with my medications and coping techniques to handle stress and avoid lupus triggers, but this week I got screwed by that company that so little appreciated the efforts Batman and Marilyn and I had put into tying for first place that day because they didn’t process my termination paperwork in a timely manner, so Blue Shield of Texas had cut off my health insurance before I received my COBRA benefits package right in time for three big doctor’s appointments that were part of my Benlysta infusion treatment and me needing to refill some of my prescription medications at the pharmacy.

I spent almost two whole days on the phone with the COBRA plan administrators begging them to process my benefits elections and payment and start the reactivation process with Blue Shield in time to prevent me from missing my infusion date, while trying to fit in half a dozen job interviews and calling about half a dozen appliance repair places to find someone who could reconnect my washer and dryer at the new apartment next week, completely failing to pack a single box to prepare for my apartment move tomorrow.

To quote Thomas Paine, “these are the times that try men’s souls.” I’ve not really ever had the luxury of being able to be weak and rely on other people to help me through my problems, and this was no different. I couldn’t count on the former employer to help me because they were so inefficient they caused the problem in the first place, and there wasn’t really much that any friend or family member could do to help in this particular situation, so all I could do was keep making phone calls and praying that God would put the right person on the other end of the phone who would actually listen and lift a finger to help me.

I have inherited from my father the trait of being a worrier-fixer, which means that I am the person who looks forward and sees all the things that are ahead that can go wrong to try to prevent them, and automatically feels compelled to suspend all emotion until I have a plan and have put everything in motion to save the day. It’s not a bad trait all around. To everyone else, I am the strong, survivor capable of handling anything and making it look easy so rarely anyone ever thinks I could possibly need help. I am always their rescuer and thus I must not need one of my own. If only they knew how much my stomach and my mind twist in knots and I writhe with frustration whenever people say, “You’ll figure it out; you always do…,” or “you’re a survivor. Things always work out for the best…,” or heaven help me, “God has a plan.” All those kindly words of encouragement people think they are offering me just ring in my ears as what they mean to me: Damn that sucks, but I don’t care enough about you to help.

The trouble with being a worrier-fixer that is the child of another worrier-fixer is that you quickly learn that sharing your problems with your worrier-fixer parent is that he can quickly become your worst nightmare because he automatically emotionally takes on your problem as his own to solve, and quickly rehashes the fears that you’ve already had and rationalized into the category of “not helpful to dwell on,” making you second guess your judgment for dismissing them to focus on usable facts to try and come up with your own solution, and will compound it by taking it personally or insisting you haven’t heard their concern and taken it seriously when what you really need to do is come up with a plan and move forward. So turning to mom and dad for support was a known nonstarter.

Luckily for me, God did offer me some help in a man named Jim who answered my eighteenth call to the COBRA Administrator’s customer service line after getting blown off by dismissive customer service women who didn’t understand that untreated lupus in a stressful period like this causes severe pain, partial paralysis and mobility impairment. I had to beg for a fax number from one of those women just to get my election form in to their office without having to wait for the regular mail to make it to them, and pay online or over the phone to expedite the process? We’ve never done anything like that for anyone before. You should just wait. It will all be reinstated retroactively.

But my savior Jim, he was someone who could listen and think outside the box, so he was willing to do the legwork to step away from his desk to – gasp!—talk to the election forms processing people and make sure they received my fax and YOWZA! He actually walked further down the hall to talk to the IT department and get them to put a dummy payment in the system so they could activate my online registration so that I could pay online while he was on the phone with me and then let them drop the dummy payment once my real payment was made. And then, wonder of wonders! he actually called and emailed Blue Shield to ask them to reactivate me in time to save my infusion appointment based on the information he could provide.

As a woman, it pains me to admit this, but Jim was a breath of fresh air and the women I talked to—they could have given me as much concern as if I were complaining about being forced to miss an appointment with a dermatologist to get acne medication. So much for our reputation as the fairer sex, known for our inclination to nurture and care for those who depend on us.

With all this week’s medical drama added to the aggressive quest to find a new job and prepare for my move, I probably wouldn’t have a word to say on this self-proclaimed dating blog, except that the world works in mysterious ways and a would be suitor I had met via and exchanged texts with briefly before leaving him long forgotten decided to text me out of the blue to ask if I was still available.

It was a bit of an awkward approach because I hadn’t thought enough of them to program his name in my phone so I had no idea who was texting me to say, “I know we haven’t been in touch in almost a year but I just wanted to reach out and say hi. In the last year I got pregnant and married.” Which naturally led to my confused response – Congratulations on the big news. I’m sorry but I don’t have your number programmed in my phone so I am embarrassed to ask-who are you?

Apparently in a bout of eagerness and being all thumbs, he had meant to say, “I was wondering if you had gotten pregnant or married since we last connected.” After a picture text and a few remember we talked about such and such-es my memory started to be jogged, and he asked if we could finally set up a date.

I was torn. My first instinct is that if I didn’t think enough of him a year ago to program his name into my phone or go on a date then, then I probably would come to the same conclusion this time. I told him that I was tied up with my move this weekend and wouldn’t be available, and he immediately offered to summon up some buddies and a truck to help with the heavy lifting.

I told him not to concern himself about it because I had already hired some laborers to move my stuff and would rather have it handled by insured professionals than save a few bucks by relying on friends to get things down two flights of stairs and about 100 yards down the sidewalk to the new apartment and winding up upset or screwed if something was dropped or scratched.

But he was so eager to continue to offer to help me that it makes me take pause. Here I am having spent an exhausting week trying to solve a butterfly summoning load of personal problems and fuming that until I found Jim in the eleventh hour, there was not a soul who could or would offer to help and here I was in a manageable pinch with someone eager to offer more help than I had considered wanting or needing? The Greek deities must be laughing at me right now, and I must consider the question – is that worth a meal or a cup of coffee to meet this guy in person to see if he is worth letting in?

I’ve got too much to deal with right now to think about it that hard, so friendly opinions are welcome. For now, I have left this potential date as “Maybe, Tuesday.” I’m not sure if Madam Butterfly will have flown away by then…


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