Feeling Better, BUT...

My last post was telling you that I've made steps in a positive direction (yay!) which is HUGE over the past few months.  That post was all good news.  I don't have bad news to go with it, but I'm afraid too many people are going to read and think that everything is fine now.  In case I haven't said it already a thousand times, endometriosis is not curable.  I am going to have it.  Tomorrow, next year, at least until menopause... I'm going to have it.  With that comes decisions about hormones... which I am also going to be on until menopause to keep the endometriosis at bay.  And those hormones are not really supposed to be long term solutions.  They come with a long list of side effects!  Plus the supplements to help my body fight off the endometriosis that I guess my body wants to produce.



I have been here before.  Feeling SO CLOSE to better, so I am hesitant.  If you read the wonderful article I linked to from the woman who lives with lupus, you may understand when I say that even feeling good isn't the same as it used to be.  Now I wonder how long it will last.  I wonder if the pain will come back if I do the wrong thing.  I wonder how much I can push my body and then how much will my body push back.  Plus, I've learned not to be sold on a good direction until it lasts a week.  And all this is contingent upon me getting a good night's sleep.

Before I got sick, I didn't worry and plan about everything I would do.  If I didn't get a lot of sleep, I'd be tired, but whatever.  Now, not getting enough sleep can cause pain and throw me off of my schedule.  Controlling my schedule is very helpful in controlling my "disease" or really just pain.  People say you can't control life; that it just throws things at you.  Yes, I agree.  Therein lies the frustration.  I may not be able to have no stress in my life, but I have learned how to handle my body in times of ordinary stress.  This, coming from someone who thrived on stressful situations.  I could be a go-to person in a disaster, I want(ed) to be better than everyone, and I want things that I work at to be the best they can be.  Unbearable pain can change your priorities very quickly, I've discovered.

Now, however, I wonder about getting a job.  Can it be a job with stress and competition (which I actually enjoy) or should I be looking at jobs as a librarian?  And if that's the case, can I really prevent myself from not turning that librarian's job into a competition for myself?

Yes, I'm feeling better.  But it's also with help from different medicines.  Can I feel better without them?  I wrote that I felt two layers of pain.  Well, underneath the ever-present dull pain, I've discovered a more acute, intermittent pain in the lower left quadrant of my pelvis.  This makes me wonder if the kidney stone I had after surgery could have left behind some damage.  My doctor acknowledged it was a valid question.  If this acute pain doesn't go away, my options are: live with it (which will obviously depend upon the severity of pain and if it hinders activity) or... more surgery!  Because there is no way of knowing if there is some residual damage unless they make some cuts and look around.  I can't even tell you how much I do NOT want that.  I'm glad I had surgery; I'm glad I'm taking a bucketful less medicine that I was and I would be quite glad to never have pelvic surgery again.

To illustrate exactly what I'm talking about, today I woke up with a stabbing pain that was nowhere usual.  I took twice the vicodin I usually did and I am fairly sure the pain is coming from my left mid-back.  And what is located in that area....?  OH RIGHT... my kidney!!  I hope it's a weird anomalous pain that means nothing but the fact that it could be my kidney freaks me out beyond belief.  I think anyone who has had a kidney stone can tell you that just the thought of another one is enough to scare the crap out of you.  So hopefully nothing like that.  But then that means I woke up with a stabbing pain, not in my pelvis for no reason whatsoever.  Not altogether a comforting thought.  So yes, I'm feeling much better than I was the last three months, BUT...

I'm still living with endometriosis.