Baby Steps

First of all, an update on Aurora.  She is hanging in there.  I would say that her health is no worse than it was a month ago.  In some ways she is healthier.  I'm not sure what the future holds as far as medication goes, but I'm grateful that she isn't getting worse. She has an appointment with a specialist in a couple of weeks, so we hope to find out more soon.

As far as our dynamic goes...things have been in sort of a holding pattern.  This past weekend, however, Aurora asked me if we could take things deeper on the mental side of things.  She craves the control and while the physical side needs to be limited because of her health condition at the moment, she really wants to work on the mental side.

After some thinking about this, I have decided to slowly go deeper mentally.  I will confess that I had and still have some reservations about it.  I have seen that what we are doing now is working.  Her condition is not getting worse and I'm a firm believer in the saying "If it ain't broke, don't fix it".  However, in a way it is broken.  Aurora isn't getting what she needs right now and either am I.  So, while her physical health will always be my number one priority...it is worth exploring if we can grow mentally without affecting her condition.

I am going to go slow with this.  I know that will frustrate Aurora a little bit, as patience has never been her strength...but I have a couple of reasons for the slow pace.  First of all, I want to make sure that whatever we do, it doesn't affect her health.  And secondly, this is going to be a long road.  I want to be have Aurora feel like we are not standing still.  I feel like if I gave her a bunch of rules and rituals right away, she will soon feel like things are standing still again.  It's important for us to feel that connection and feel that we are growing together. 

I have no doubt that we will beat this nasty disease and that we will get back to where we used to be, both physically and mentally.  Baby steps and patience are going to be essential.

Disappearing

I’ve been trying to write something for a while now, but I’m really not sure what to write about. Or if I should even post at all. Or even blog anymore.

I have been reading here in blogland sometimes too—or rather lurking. I know it sounds silly, but commenting, like blogging, has always stressed me out a little. I get so insecure about it and agonize over every little word and worry about saying the wrong thing or offending somebody or my words not coming out right. It was getting easier, but now that I’ve been quiet so long it feels impossibly hard to comment again. And Phillip, who knows very well how much I overthink all this, would rather I just stay quiet and not stress about these things. But I do want to say I miss and care about you all.

Healthwise I’m hanging in there and getting by with just painkillers and topical stuff. None of the truly icky meds yet…although the odds are high I’ll need something, but the plan is to hold out until I get to see the specialist sometime next month. So many doctors know so little about this disease and we’d rather wait for somebody with experience in treating it. The physical symptoms are more of an annoyance than a serious threat at the moment, but because of the risk of things going ‘bad fast’, sex, spanking, and pretty much anything fun is off the table.

So these days, my focus is supposed to be following my new caffeine-free, sugar-free, gluten-free, preservative-free, oh-this-sucks-so-bad diet and learning to deal better with stress. It’s crazy how stress affects how much the physical symptoms flare or not – Phillip can tell if I’ve been stressing because it’s written all over my body now. I’ve never been very good at dealing with stress until we started this dynamic and I found such peace and release in the physical parts – especially spanking. But now that it’s off the table, we have to find other things like yoga and meditation. I think I’m flunking meditiation (it’s so hard to turn off my thoughts). But I’ve taken up drawing and knitting and those have been helping enormously.

Phillip has been wonderful. He’s taken amazing care of me and I know I am beyond blessed to have him. To be loved like this. And he’s still very much the Dominant around here and tells me what to do. And I do that….which I guess still makes me very much his submissive. But I really don’t feel like one anymore. I don’t know. Maybe it’s the lack of sex. Or the lack of spanking. Or the lack of him letting me do much for him anymore. Or maybe it’s that I can see the stress and tiredness in his eyes and I know I put it there.  I don’t know. I just know I feel like the parts of me that were Aurora are slowly disappearing and all that’s left are the empty holes where she once existed.

Phillip says not to worry and that he’ll get her back. We’ll get this back. He won’t forget. And when this is all over, he’s taking me away somewhere (and that Daddy-side of his is NOT invited). And I believe that and really look forward to that day. But the reality is that could be years from now.

So until then I'm just hanging on and hoping I don't completely disappear.

It's Been Awhile

I know that it has been awhile since Aurora or I have written anything here.  I just wanted to check in with all of our awesome followers and let you know that Aurora is doing alright.  This new health concern has been tough on her, but her spirits are getting better.  She is getting some fight in her and developing a much better attitude towards the fight we have ahead of us. 

Because of the nasty side effects of the proposed drugs used in treatment for this disease and the fact that her case is fairly mild, we are waiting a little bit before proceeding with the conventional treatment.  I have noticed that stress is a major trigger for worsening symptoms, so my goal right now is to have Aurora avoid as much stress as possible and we are also working on techniques to deal with stress efficiently when it does arise.  In addition to that, I am changing her diet drastically and we have found some more natural "remedies" to try.  I'm not a huge believer in natural or herbal remedies, but after taking some time to think about it, it became obvious that it is worth a try.  At worst, she will be healthier when she has to take those nasty drugs.  At best, she never has to take them. 

I know one thing that bothers her right now is that this disease has taken a real toll on sex.  She misses it.  I miss it.  However, I am in major "Daddy mode" right now.  I want to do everything I can to make her better.  And having been through health issues with her before, I know I'll get my satisfaction eventually.  When Aurora is sick, my satisfaction comes when she is all better and I can look back at our journey with pride knowing that we successfully battled through it.  That alone brings us so much closer together.  That is true satisfaction!

Again, thank you all for keeping Aurora in your thoughts!

One In A Million

I know I need to catch up on all the great comments but really wanted to say thank you so much for all the amazing support and swearing on my behalf!

One in a million. According to some sources, that’s the odds of getting this disease I have. Some places claim it may be as high as 1 in 200,000, but they all seem to agree it’s rare. And unlike diabetes or celiac or lupus, it has a long name that’s hard to spell and even harder to pronounce and that NOBODY seems to have ever heard of before. My only risk factor for getting it was a drop of diluted Jewish blood courtesy of my father’s side of the family tree. Which is sort of funny to me because I’m not considered Jewish because my mother isn’t, however I’m ‘Jewish enough’ to apparently get this disease. Go figure.

Nine in ten. More than fifty years ago, those were the odds I’d die from the actual disease. Today those are the odds, I’ll survive it. Some studies claim the mortality rate is as high as 30 to 40 percent (but I’m going to stay on the optimistic side here). The downside of these odds is that the traditional treatment usually requires a scary high dose of steroids over a long period of time to put the disease in remission and in the majority of personal stories I’ve read, although they reached remission, it came at a high cost.

Now the thing about odds are that they are just numbers. And unlike something like the lottery, nobody is ever equal. It sort of reminds me of my ‘writer querying days’ when we’d try to calculate our odds. But you really couldn’t because no manuscript was equal. Some were better written, some were the ‘right story’ at the ‘right time’, some clicked better with certain agents, etc. And it’s like that here…everyone is different. The disease is different, reactions to medications are different, etc. 

I’ve done a lot of reading over the past few days. Not those scary websites---no I dug deeper for the real stories. Kinda like looking for this diseases's version of blog land (although it's nowhere near the size of here). And it’s given me a lot of hope. Yeah, there was a lot of scary stuff, but it’s also helped me to see how lucky I am. For most people, by the time they are diagnosed they are usually so sick they’re in the hospital because they can’t eat or they’re fighting off serious infections. That’s because this disease is so rare, it often is misdiagnosed. They say the average number of doctors to get a diagnosis is around ten.

I had two. The first being my primary doctor who actually suspected the disease. Because of this, I am not that sick. No hospital. No serious infections. If this was cancer I’d be Stage 1 or maybe even Stage 0.  I am just not that sick. I am not a doctor, but this does make me hopeful that this means the amount of steroids and duration to get me into remission will be a lot less. And if not, there’s lots of new drugs and therapies that have worked on others without the mega-risk of the steroids. I’ve also found a doctor covered by my insurance who specializes in the disease. And if we don’t like her or can’t get the referral her, we live an hour away from one of the best research hospitals in the country and Daddy says that’s where we’re going next.

One in a million. I once called Daddy that back in the early days. It wasn’t as sweet as it may sound at the time. We had only known each other a few weeks but we’d been e-mailing about some deep subjects—religion, politics, sex. And there were questions like... ‘what would you do if you got a girl pregnant out of wedlock’ and ‘would you ever cheat’. I was coming out of a very bad relationship and Daddy’s answers always seemed ‘way too good to be true’. So a part of me at the time thought it was all a line. So I wrote to him, slightly disbelieving, if “he was who he said he was, then he was one in a million.”

But I’ve learned Daddy’s a man of few words and rarely says something he doesn’t mean or intend to do. Because he did get a girl pregnant--me.  And despite neither of us being old enough to drink, he did exactly what he said he would in those first few weeks I knew him. And during a decade-long sex drought when he probably should’ve cheated, he kept his word and never did.

Daddy told me not to worry about this disease. He’s going to make sure I have the best doctor and the right treatment, and he’s not going to let it get that bad. And that no matter what happens…whether the drugs take my sex drive or make me go crazy, he’s not going anywhere. I’m going to be okay. He’s going to be okay. We’re going to be okay.

And I believe him. Because he really is my ‘one in a million’.

Fudge You 2014

During some of the days before and after my surgery, Daddy and I often talked about how we couldn’t wait to ‘get back to normal’. When Daddy left for his trip we talked of how close we’d be ‘back to normal’ when he returned. One of Daddy’s tasks he assigned while he was gone was to list everything I was looking forward to about ‘getting back to normal’.

Today I learned we won’t be ‘going back to normal’. Not any time soon. Maybe not ever. Early this morning the doctor called with the news I really hoped I wouldn’t be getting.

Daddy was at work when the call came and he’s having another busy day and even though we’ve managed to talk and text, I really can’t wait until he’s home. So far, I’ve managed to stay busy. I had doctors to call, appointments to make, and new doctors to research. But now that’s all done and there’s still nearly three hours to go before Daddy gets home.

And I’m scared and frustrated and angry. Very angry. I mean I know it’s not cancer, but it’s fatal if I don’t treat it. And treatment involves taking high doses of oral steroids and immunosuppressants that have side effects that will most likely make me feel way sicker than I feel now. And since it’s so freakin’ rare, the doctor who diagnosed it doesn’t even know where to start to treat it so I’m off to find yet another specialist (and hope to God they take our insurance).

And this is all I really have to say today (well I have more but it would involve using words I’m not supposed to use and despite the fact I'm thinking them all right now, I do still love and respect Daddy so I think I’ll stop right here).

His

Daddy came home a day late and is super busy at work this week. I broke another rule and I'm waiting on two punishments now. I'm fighting a cold and PMS and a bit of a fibro flare-up. Mother Nature can't seem to let go of winter and just give into spring. The meds the doctor put me on last week have me feeling like a zombie. And tomorrow, I get the test results.

But none of it matters.

Daddy got out the crop and the cane for the first time in months. I don't remember it hurting so much (and he says 'he went easy'), but it just shows how far I've drifted. From him, from us.

But over the past few days as he's played and spanked and grabbed the back of my head the way he does when I say or do something out of line, I've found myself sailing back into His harbor. As I've sat at his feet again, I've remembered and tasted and wanted and needed this.

I need to be His.

So no matter what tomorrow brings. If Daddy's job tells him he has to go away again next week or next month or next year. If it snows or rains or is 70 degrees and sunny. Or if the doctor says that I have this disease or don't have this disease or they lost the test results. None of it matters.

All that really matters...all that will every really matter.

Is that I'm His.

Enough is Enough

So yesterday I got in some pretty big trouble.

I went to my regular doctor on Monday for something I considered rather little. It was a follow up appointment over a symptom I had put off until after my surgery. Something unrelated to the surgery.

My regular doctor wanted to send me to a specialist. Still not worried. Not until I found out they were considering it ‘urgent’ and asked if I could go in yesterday afternoon.

There was barely enough time to text Daddy and get out the door to make it in time. But we did. And yesterday I found myself in a doctor’s office, half-naked with my mom and two nurses and the doctor and desperately wishing Daddy could be there. The doctor told us what she thought it could be – a rare autoimmune disease. It could be the cause of why I had to have that surgery last month. But I won’t know for a week and she’ll be calling me with the results. She also told me not to go looking it up on the internet and wait for her instructions.

I called Daddy after the appointment and relayed all the news and he ORDERED me to stay off the internet.

So what did I do?

Well…with a doctor telling me not to go looking and Daddy over a thousand miles away and my morbid curiousity getting the best of me.

Well, I googled it. And I read lots of scary things about it being rare and serious and fatal. And that up until about fifty years ago, 99 percent of people that got it died within a few years. And yeah, it all freaked me out. The internet is a scary place.

Daddy was NOT happy. He was very angry and once he was done letting me know that, he hung up. And I locked myself away in our master bathroom bawling my eyes out when I realized that my biggest fears weren’t having this disease or dying from this disease.

My biggest fears are Daddy saying “Enough is enough.” That I had gone too far by deliberately disobeying him. Or that he can’t deal with yet another ‘medical problem’ of mine.

Daddy didn’t say either of these things and we did talk last night and although he says I’m gonna ‘get straightened out when he gets home’, he did forgive me for not doing as I was told. And I’m so thrilled that late tonight I’m finally going to be safe and secure in his arms again after this super long week.

But I still can’t stop this nagging fear today. I'm starting to think that maybe we've been so happy over the past two years...that maybe people don't deserve to be this happy. We’re barely through this last ‘health’ storm and in a week we could be starting another one. I mean, seriously, when is enough enough?