Project Desire — A Personal Update

Sadly, my Mojo remains a no-show.

I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf, and because it has devastated my life sufficiently to have more than earned his own pronoun.

A recent insurance nightmare forced me off of a key medication because of cost. It’s an injectable bio-medication that alters my cells so that my immune system is less whacky. Eventually, the medication was restored but not until I’d gone off of it for about three months and gotten really, really sick. I was thrilled to have the medicine again but something unexpected and unpleasant – ’natch – happened. I suffered and am suffering from horrendous side-effects. It had never occurred to me that would happen simply by resuming the medication, since I’d used it for about 10 years.

I have endured the nausea, aches, hot flashes (I’m 54 – well past menopause) and fainting spells like a trooper. But, the worst side-effect totally blind sided me: In the twinkling of an eye, my libido disappeared without even the courtesy of an adieu!

Frankly, desire has never been a problem for me, at all. My sexual issues all related to being able to perform despite the physical limitations, disability, imposed by Mr. Wolf, which not only includes losing range of motion, a lot of pain, but also debilitating fatigue. So, I had no problem getting revved, but rather staying revved at certain...critical...times.

As regular readers know, sex has been saving my life – or more precisely, has helped me decide to hold onto it for as long as I can. When I’m having sex, I am no longer disabled. The pain and misery that has been Mr. Wolf’s calling card transcends into pleasure. Touch and intimacy has been my link to life, and to the divine. In those moments, I am my true self again. Not a disabled person on her way out, but a vibrant woman who was put on this planet for some purpose beyond her finite understanding. (I have always lived my life as a sex-positive person, but if I hadn’t, Mr. Wolf would have converted me at the very first orgasm!)

Now, desire seems a foreign concept. The doctor has said she does not know when my sexuality will reassert itself. I refused to accept that and launched Project Desire, in an attempt to rekindle the ’ole fire down below.

Thus far, re-igniting desire’s flame as been a very slippery – or in my case a very non-slippery – slope.

The usual suggestions to increase desire in women who have lost or lower libido don’t really apply to me, because I’ve lost it as a result of medication issues, not through poor self-image, or some other emotional factor.

What I have been doing is:

— Continuing my usual masturbation routine, making sure that I use plenty of vulva-friendly lube! I have been an enormous proponent of solo sex for decades. It allows women, who generally have little experience with it compared to men, to take charge of their own sexuality and needs. Masturbation can teach women how they like to be touched and what they don’t like. It also teaches how to accept and love our wondrous female bodies, especially if you’ve suffered abuse in the past (I was molested when I was a young girl.) I remain committed to masturbation, even if it doesn’t lead to orgasm, it is still a very erotic, sensual practice. FYI: Let me be very clear, masturbation is REAL sex!

— Reading erotica by my favorite authors including Alison Tyler, Alison's Wonderland, and Radclyffe, Trauma Alert. There are so many great women writers who pen erotica. If you’ve not taken time to read any of it, do yourself a favor and experiment. Read some reviews, then jump right in. There is something for everyone’s tastes, from mild romantic fare to hard-core, explicit, fetish, kink and everything in between. If you like to fantasize about BDSM but don’t want to actually try it, reading erotica with that theme might be the perfect solution.

— Watching female produced porn, including the fabulous Crash Pad series featuring the amazing Jiz Lee and others, and the erotic DVD’s by the Welcomed Consensus. Like masturbation, fewer women than men watch porn, but the number of adult women viewers is the largest growing demographic in the field. Just like reading erotica, there is porn for every person’s tastes.

(I’m bisexual, so I like erotica and porn that is either focused on straights, gays, or a combination of the two – isn’t that so cool!)

— Doing as much sensual touch, kissing and foreplay as possible. Receiving a massage can be both sensual and a pain-reliever for me. I love this, even if it doesn’t end up in bed.

The result of the above strategy? Thus far, my libido remains in very cold storage.

I hereby make the following promise: I refuse to just give up! Damn it to hell, Mr. Wolf can have my joints, and even my ability to walk, and eventually my life, but he will not take away my sexuality forever. He will not because I WILL NOT LET HIM! Period.

— The Curator

Project: D—E—S—I—R—E!

I’m old enough and motivated enough to be really good at sex.

I know the subtle, and not so subtle, nuances required to consistently give and receive enormous pleasure. I’m not bragging, it just happens when you age – and provided that you care to learn. I have always cared to learn. That’s why these last few weeks have been especially brutal.

As regular readers know, sex has been saving my life – or more precisely, has helped me decide to hold onto it for as long as I can.

I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf. I have the most serious form of the disease, Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE. (Visit the Lupus Foundation of America America for more information.)

SLE is an autoimmune disease. As such, it is characterized by a malfunction of the immune system. In these types of diseases, the immune system cannot distinguish between the body’s own cells and tissues and that of ‘foreign’ matter. So, rather than simply producing antibodies to attack invading viruses, bacteria or other similar foreign substances, my immune system creates auto-antibodies that attack my body’s own cells and/or tissues. It causes a great deal of pain, stiffness, and I’m losing my ability to walk, and to use the fingers. It also often makes me really exhausted, frequently feeling like I have the flu. And at the end of it all, is the end of it all, as it’s eventually fatal.

Recently, Mr. Wolf has been really having his way with me – and not in the good way, either. (Ironically, October is Lupus Awareness Month. I am soooo very aware – but others need to become aware, too. Research for this disease needs funding, duh!)

During the current onslaught, I blogged about having had a sudden, horrible realization: I could no longer truly remember what it felt like to be well. Oh, I had memories of being very active, athletic and whole, but they were no longer sense memories. It was as if that part of my life was so insubstantial it had been absorbed into the unreality of dreams.

That’s why sex has been so very important. When I’m having sex, I am no longer disabled. The pain and misery that has been Mr. Wolf’s calling card transcends into pleasure. Touch and intimacy has been my link to life, and to the divine. In those moments, I am my true self again. Not a disabled person on her way out, but a vibrant woman who was put on this planet for some purpose beyond her finite understanding. (I have always lived my life as a sex-positive person, but if I hadn’t, Mr. Wolf would have converted me at first orgasm!)

To say that it’s not easy, emotionally or physically, to have a consistently satisfying sex life when you’re disabled, suffering from an acute disease or illness, is an enormous understatement. I worked really hard at overcoming and/or coping with my physical limitations to be truly, satisfyingly active and intimate; to re-build my core sexuality from the ground up, as it were. I was convinced that by doing that, I would establish and be able to maintain a razor thin edge of stability. My goal was not to perform sexually as I had before since that would be impossible, but to re-invent my intimate life; to re-imagine myself and the glorious, rich possibilities that only sexuality offers.

Libido had never been my issue, and I have always climaxed easily, but it was the mechanics of the thing – the how to, given my physical limitations. I may not be able to stop the constant pain/fatigue, walk much at all, or move my hands very well anymore, but I can still orgasm, damn it! After a lot of fun, fun, fun trial and fun, fun, fun error (don’t you just hate having to try, try and try again when it comes to sex!?) I re-established a vigorous sex life. Did it look like it did before? No. Was it satisfying? Hell yes!

I bet you can guess where this post is headed. Several weeks ago, I began reducing the number of my intimate encounters. Despite Mr. Wolf, I had been able to have sex several times each week – a number that even many able-bodied women can’t consistently manage.

At first, I thought it anomalous, but it wasn’t. The Lupus had worsened when I was forced off an important bio-medication for financial reasons related to my idiotic health insurance. I have resumed the med, but have not stabilized, and my libido is now definitely M.I.A. Apparently, it’s the side-effects of resuming the medication, as well as Mr. Wolf strengthening.

It may take longer than initially thought to get through the side-effects of the drug. I’d been on it a decade and off for only about three months. When I first began it, it was two months before the side-effects eased. Now, I’m 10 years older and the disease is much worse, so the doctor just told me that it may be closer to four months before the side-effects completely end, and two months beyond that until its benefits fully kick in! She does not know if, when the drug is finally good and truly in my cells doing its thing, Mr. Wolf will give up some of the ground he gained when I off the bio-medication, or if his aggressive presence is permanent.

[Above: Eros Sleeping!]

O-K then! I prefer to believe that I will be able to make up the ground, and will eventually send Mr. Wolf packing to a distant hotel (he always travels top drawer you know, so no motel for him!) So what happens to my sex life in the mean time, doc? How can I reclaim desire when I can barely stagger to the grocery store for food? More importantly, if I have to wait it all out before I can again be sexually active – or even want to be sexually active – what will that do to my psychological/emotional state? Should I try to re-invent myself yet again and attempt to establish a sense of well-being, a desire to stay alive and be connected to the divine without using sex at all as a significant means to achieve that?

Truthfully, I just do not know how to do that. I’ve agonized these past weeks until my puzzler has broken. Well, to hell with it! I will not abandon who I am. I WILL NOT! I will instead launch Project: Desire. I will try everything I can to add a bit of zing back into my life. It may not lead to full-blown sex, but some desire, and sensuality? I can do that, you bet I can.

So, Mr. Wolf, I am putting you on notice: I hereby refuse to allow you to turn me into a non-sexual blob of flesh again. NOT EVER AGAIN! I don’t care how long it takes, or even how I will manage it, but mark my words, I shall be a sexual human being again, because that is simply who I am.

I said this once before, but apparently Mr. Wolf thought I wasn’t serious. I am: Sex doesn’t just promote my overall health, it promotes the very breath of my life!


— The Curator

Keeping the Wolf at Bay

Do you call out to deity during sex – when the universe dissolves and the only thing that exists is your body? Do you call out to deity during sex – when your body dissolves and the only thing that exists is the universe?

Sex is saving my life – or more precisely, has helped me decide to hold onto it for as long as I can.

I have Lupus, which I refer to as “Mr. Wolf,” because lupus is the Latin word for wolf. I have the most serious form of the disease, Systemic Lupus Erythematosus (pronounced: er-uh-thee-muh-toe-sus), also called SLE. (Click here for the Lupus Foundation of America.)

SLE is an autoimmune disease. As such, it is characterized by a malfunction of the immune system. In these types of diseases, the immune system cannot distinguish between the body’s own cells and tissues and that of ‘foreign’ matter. So, rather than simply producing antibodies to attack invading viruses, bacteria or other similar foreign substances, my immune system creates auto-antibodies that attack my body’s own cells and/or tissues.

The past few months have been bleak. Mr. Wolf has been feasting virtually at will – and sister, does he have a lot of will. During the current onslaught, I also had a sudden, horrible realization: I can no longer truly remember what it felt like to be well. Oh, I have memories of being very active, athletic and whole, but they are no longer sense memories. It’s as if that part of my life was so insubstantial it has been absorbed into the unreality of dream.

When I was first diagnosed about 15 years ago, I was consumed with knowing why my own body was trying to destroy me. At first, I found myself looking deeply into the mirror: Who was this stranger that had taken over my body? And, even more importantly, how could I ever learn to live with her?

I fell into a deep-as-the-deepest ravine depression. There was nothing left of the person I once was. Nothing, absolutely nothing, remained. Or so I thought then. I was wrong. Very wrong. A tiny, itty-bitty, bright even luminous speck of something had survived.

Was it my soul? I still don’t know, but I think so. I also came to believe it was the divine spark of creation housed within all beings; that indescribable “something” that connects us all to each other regardless of race, gender, age, creed, religion or geography. Whatever it was, I felt it. Visceral.

But for the past few months, nothing. It had been a long process, but I had finally begun to believe again that I had a body, that I was a woman, not simply a lump of flesh that temporarily housed my brain until my ever-approaching death. Unfortunately, almost imperceptibly, I had become a “thing” again.

I had thought that once I had found my “soul,” that knowledge – that sense of self, would be mine forever. It was sobering indeed to realize that self-knowledge, even hard-fought, can be forgotten in the face of relentless disease and disability. So, once again I stood on the very brink. I had managed to take a step back once before, but did I have the ability, or even the will, to do it again?

For days, I stared at the pill bottle, my “stash” I had hoarded for years that would bring on the ultimate darkness. If I gave in to its seduction and the sweet oblivion it promised, I would finally rest. And, I was so very, very tired.

I thought back, what had I done before? What was it that had caused me to give a damn whether I met the next dawn? Slowly, I remembered – it was that little zing of life. That shooting feeling that you are, indeed, alive. Even muted by illness, it was still there, still calling me unceasingly back from the brink: Sensation.

I sighed and put the pill bottle away. I would begin again. Instead of fighting with/or hiding from Mr. Wolf, I would try to regain the truce, the peaceful co-existence, the political accord that I had hammered out with him before.

Since then, I have worked to reclaim my body, make her a part of me again. Integration in a literal sense. I have been kind, nurturing, drawing her back – wooing her as would a gentle lover. A long, heart-felt embrace. The ultimate seduction: The self.

Once again, she is transformed. She is no longer the enemy, nor a victim. She is simply me. My honest sexuality remains the key. I worked to feel arousal again, even a nano flash of sexual interest. Once I did that, I almost immediately remembered the long-lost feeling of my “soul.”

When I’m having sex, I am no longer disabled. The pain that has been Mr. Wolf’s calling card transcends into pleasure. Touch and intimacy is my link to the divine. In those moments, I am my true self again. Not a disabled person on her way out, but a living, vibrant woman who was put on this planet for some purpose beyond my finite understanding.

It seems significant that I had to relearn this simple message. Perhaps I failed to appreciate that it needs to be practiced often and with mindfulness to be remembered. The truth is I can still feel – a lot. I am still a human being. So, I plan to stick around this ol’ planet of ours until I’m finally called home. My hands may shake and my legs may not work, but my heart and soul are still mine. Real intimacy reminds me when nothing else does.

It’s not easy, emotionally or physically, to have a satisfying sex life when you’re disabled; suffering from an acute disease; or illness. I am convinced, however, that it is impossible to thrive without one. Sex doesn’t just promote overall health, it promotes the very breath of life.

— The Curator