Tag Archives: dating; lupus; men; women; relationships; sex; love; humor

My Game Changers

My Game Changers

So, before I get too far down the road, sharing my struggles, humiliations and devil may care point of view, I think it’s important to preface these stories with some important background.

Dating for me is not like dating for the average person because life has thrown me some pretty big curve balls and I am still in the learning process adapting to my new circumstances.

  1. In September 2013, I was diagnosed with Systemic Lupus Erythematosis (SLE), and being saddled with a chronic lifelong illness after years of deluding myself that I was simply prone to the flu or allergic to everything around me, I am still very much learning to deal with the challenges it has presented and the knowledge that this is my life and it’s not going away.  Most people that don’t have a family member or loved one who has lupus don’t really know what it is or have any sort of framework to understand it.

i.      So crash course: People with lupus have overactive immune systems. In normal cellular processes in anyone’s body, the life cycle of a healthy cell releases B proteins that are basically cellular waste that work their way out of your system. In a lupus patient, these B proteins are slightly mutated and the immune system recognizes them as foreign, and sends antibodies to attack what would be otherwise healthy tissue. Because this happens on a cellular level, this means that antibodies can attack any part of the body at any time.

ii.      Think of it like having an allergic reaction to yourself. If you are allergic to a bee sting, your body releases histamine to the area where you got stung, it swells up and itches like crazy. If you eat something you are allergic to, your throat might swell up and cause you difficulty breathing or swallowing, or the food can sit like a brick in your digestive system slowing you down as it takes an inordinate amount of time to pass through. In either case, you experience serious fatigue because all your body’s energy is going to concentrate on the problem until you’ve gotten rid of it.

  1. So in my experience, dealing with lupus has presented the following dating hurdles:
    1. When I am having a flare episode, I get really fatigued and terrible at returning phone calls, texts and emails. This can be the kiss of death for a fledgling relationship because people need that continued reassurance of my interest to know whether it’s worth it to ask for the next date or keep trying.
    2. I am so fine with staying at home while a guy I date is out on the town with his buddies or busy with his job, but at a certain point, being an absentee girlfriend who is just happy to cuddle up when the guy comes home starts to feel like I’m more of an inanimate object than an active participant in the relationship. More than once, boyfriends have been befuddled by my lack of jealousy or demands to be a part of every moment. It’s not that I don’t want to be part of everything that’s important to my guy; I just don’t want to hold him back when I’m not up to it.
    3. The dreaded discussion of when to disclose my lupus:

i.      Obviously if we are on a date and I start to have symptoms and you see me digging through my purse for the right prescription bottle for the symptom that’s bothering me at that moment, it raises some questions. Am I prescription drug addict? Do I have cancer? Am I a drug dealer?   Am I dying?  Why exactly do the contents of my purse resemble a Walgreens pharmacy? Am I supposed to excuse myself to go to the bathroom and try to hide it?  It’s not that I need all that medicine all the time.  It’s just that I have to be prepared for whatever will happen whenever it decides to happen.

ii.      The conversation about how you feel about having kids. When you get past 30, most people have kids or want them, so this is an incredibly awkward topic. Once upon a time, I dreamed of living an ordinary life and really wanted to have biological children that I could love and cherish and mold into amazing human beings who would carry on my legacy and aspire to make the world a better place. But when I got diagnosed, I looked up the facts:

  1. Doctors recommend that a lupus patient be flare free for at least a year before trying to get pregnant because you have to go off of a lot of lupus meds that could potentially harm the baby, and going off the meds means that you are in extra risk for kidney failure, pericarditis, and other really serious problems that can be caused by an unchecked lupus flare.
  2. There is a hereditary factor by which lupus can be passed on genetically to your children. Not everyone who gets the gene develops lupus, but if you have the gene, it can be triggered by extreme stress, long term illness and various other environmental factors, none of which are fully understood. So knowing the difficulty lupus has brought me, it seems to me like it would be selfish to insist upon producing biological offspring that is more likely than the average person to struggle with this illness.
  1. I have been married once before and it didn’t work out.
    1. I was the girl next door and he was the exotic Russian man who used to feed my beagle scraps when I wasn’t home so that every time we walked, she would inevitably drag me by his front door and over time he worked his charms on me. I denied it for a long time because we all know how awful it would be to date your next door neighbor if things didn’t work out, but the chemistry was electric, and in the end, not only could I not resist, it was a fix I couldn’t give up.
    2. Over a seven year relationship, passion and continual evolution of our sex life was never a problem. What became a problem was my undiagnosed lupus that led me to withdraw from so many of our treasured social outings, and be too tired to keep up with basic life at home. He thought this meant that I didn’t care, and I knew that there was something real and physical wrong with me, but without the right doctors on the diagnostic trail to understand what was happening to me, I’m sure that seemed like a pretty lame excuse. Instead of talking it out like adults, he turned to alcohol and drugs and I became progressively more incapable of doing anything except sleep. I watched him go through two DUIs and and anger management class and chauffeured him around while he was without a license until finally things came to a head when he decided I was so inaccessible because I must have been cheating on him.
    3. We had become toxic to each other and had to face the hard lesson that sometimes, no matter how much you love someone, two broken people hit a point when that love just isn’t enough and you have to separate in order to heal and become whole again. For us, this meant divorce, and me moving in with my parents for a year in Texas so that I could have their support while pursuing diagnosis and treatment for that illusive medical condition that I couldn’t put my finger on. Sometimes we wonder if things might have been different if I had gotten diagnosed before we hit that point, but at the end of the day, I think the problem was that we didn’t listen to each other and really try to understand what the other person was going through. We were both so absorbed in our own experience that we were not in a place to hear the other person out and believe what they had to say, and I don’t know if that’s something you can fix. Especially when alcohol and drugs factor into the equation, I fear that it’s easy for people to fall into old bad habits.

So my new year’s resolution for 2014 was that this year is all about figuring things out, finding my limits, understanding what I can and cannot do or deal with, and trying to find the best scenario for me to give love another chance.

My menu of choices just got a lot bigger because these setbacks turn some people’s minuses into pluses.  Travel three out of seven days a week for work?  No problem, that’s time I don’t have to be energetic enough to entertain you.  Don’t want kids?   Great.  Not sure I do either.  Already have kids?  Great, then the pressure’s off me to have them for you.  And if they’re already a couple years old, no diapers to change.  Awesome!

Or so I thought, but I am starting to learn that occasionally minuses are just minuses.

Even so, I’m throwing the old rule books out the window. I’m deciding it’s ok if I don’t call back and it doesn’t mean something is wrong with me if I don’t get a call back. It’s ok to have fun and just let something be what it is, and if it turns into something great, then that’s just bonus.

I’m going to make mistakes. I’m going to sift through turds in search of a diamond. And maybe, if I’m lucky and I play my cards right, just maybe I’ll find one.

Wish me luck!