Today was pain free, but I’m bitter.
Today I got up with my man and he went off to work and I went to the acupuncturist.
I told Dr. Yan no more electrical current - it just makes the pain worse. I told him how I collapsed from the pain of my condition twice yesterday and that I’m not sure if it’s from acupuncture the previous day, if it’s from the Chinese herbs I’ve been taking, or if I’m just having a really bad cycle.
WARNING: MAY BE TRIGGERING OR TOO GRAPHIC:
It’s just been a very long time since I felt such pain that I contemplated whether I should call 911 or just see if I could die and be at peace from the pain. I’d ingested two Darvocet yesterday the moment I felt a tinge of pain - and for what? To no effect whatsoever. I went through the entire episode sobbing at how the pain meds didn’t kick in to help see me through. No one was here except for me. I had images of being found hemorrhaged and what that would do to my man, and yet I wanted just to be at peace from the pain. This of course fed the sobbing - the fear - the panic.
When it was all over, I continued to lay on the bedroom floor and just allow myself to cry it all out. When the crying was done, I slowly, carefully turned over, got to my knees, and cried again because now I could stand and the episode was over.
Like… what the hell was all that for? An hour of feeling like my cervix and uterus was being slowly pulled out of me by a rusty claw chain, and now I’m fine, save for bleeding like a stuck pig?
WHY?
WHY do I get to go through this?
I know I was supposed to stop feeling sorry for myself and my condition. I was starting to do pretty well at that, at least I thought. But right now I’m not having the best attitude. Despite the fact that today was pain free, I’m still focused on yesterday, at how unfair it all was. And I dread tomorrow. Before anyone can start the “don’t be so negative” lecture with me, let me have a rant. I need to rant because people in the past week have really pissed me off again with their insensitivity. This is gonna get ugly.
- My menstrual cycle is NOT normal, and people have GOT to get over that thinking. I just need to stop calling it my period or “girl do0m” or menses, so I can differentiate what I go through from what other women who don’t have Endometriosis go through. Case in point: Last week I was set to deliver food to a friend’s wedding the day before the wedding. She started asking me days before food delivery date if I thought I might be well or not!!! I told NO, I have no way of knowing when I’ll be in pain. My cycle is every 27 days, and the pain can be 1-3 days on either side of the due date. I was shocked to find that she hadn’t even thought to have a backup person ready in case I couldn’t make it, so I *told* her to do this. I then felt BAD, like it was MY fault for committing, even though she could very well find someone else. I was able to make it by the way and was pain free. I even made it to her wedding, which shocked me, cuz that’s the day I was due. But even at her wedding, she began to ask me when I could come pick up stuff from her house - HELLO you have two weeks before you leave the country and I told you, I’m slated to be bedridden, I can’t likely get there THIS WEEK.
It didn’t sink in. Three days after her wedding - yesterday - she was asking me again when I’d be over. I told her I was now in my cycle and although feeling ok at the moment, did not want to chance getting on the road in case I got critical.
And just over an hour later if I recall correctly, what happened? I collapse from the pain - pain that’s not been this bad in many, many months. I think the last time it was this bad was my first period after the surgery which diagnosed me with this disease.Which brings me to
- I have a Stage III incurable illness. It’s called Endometriosis. It behaves like a cancer but is benign. But because it behaves like a cancer, doctors are baffled as to how to cure it. As far as doctors know at this time, I will live the rest of my days with this disease, which keeps growing back every time it is cut out. Women including myself have tried hormonal therapy to no avail. We’ve tried surgery to no avail (I read of some women who’ve had TEN surgeries to no avail). Many women act on advice of their surgeons and get partial or total hysterectomies TO NO AVAIL. You want stories? I’ve got stories.
Here’s a story.
Here’s a story.
Here’s another story.
Here’s a story.
And here’s another story.
And here’s yet another story.So, with regards to point number two, it completely pissed me off when, talking recently to a woman after a Business of Metaphysics class I attended, the woman kept getting upset with me every time I mentioned things I’ve tried to no avail, and how my disease is stage III incurable. She practices Qigong and wants me to try it. I do want to try Qigong after hearing her stories that night, but woman, PLEASE, at least respect me at face value from the point at which I stand before you still a stranger, and don’t outright diss MY current reality. That’s no way to be unconditional, supportive or therapeutic to someone. Maybe that’s why she’s in that class, too. She has some things to learn, yet.
Now back to why I fear tomorrow. Here’s how my cycle behaves:
Day 1: bleeding starts, usually I end up bedridden the same day, drugged on some kind of narcotic along with motrin and a heating pad.
Day 2: bedridden all day, drugged on some kind of narcotic along with motrin and a heating pad.
Day 3: sometimes I get a one-day reprieve on Day 3. sometimes i’m still bedridden all day, drugged on some kind of narcotic along with motrin and a heating pad.
Day 4: usually by this day, I get the reprieve - bleeding dries up, I get my energy back, I start feeling back to normal again and can go out and meet with friends or go back to work.
Day 5: what my man calls “The Last Gasp” - the pain returns and leaves me bedridden for part or all of the day once again, drugged on some kind of narcotic along with motrin and a heating pad.
Day 6: bleeding tapers, I am groggy and weak from the past five days, but I go back to work. I spend the next few days detoxing - withdrawling from the narcotics.
So….today was Day 4 and I was pain free: The Reprieve. This is why I fear tomorrow. Every month this happens - I start feeling guilty for fearing. I think, “Maybe this time it will be different.” And every month, it’s not different. I always get that hope though. Every damned month.
And people who don’t understand or care about my condition don’t help me with my false hope and guilt.
Tomorrow is upon us - I’ll let you know if I get The Last Gasp.
*sigh*
But right now, I’m awake. My leg is bouncing. I have energy. I should get shit done. I should stay up all night doing it in case The Last Gasp happens.
But I need to sleep. Tomorrow I have a job interview.
I still plan my life, even though the Endometriosis has a good chance of rendering me bedridden. I didn’t put my life on hold for it when my friend was getting married. I didn’t put my life on hold for it when job hunting and scheduling an interview. I want people to remember this, and NOT get down on me if in fact I have to actually cancel or reschedule. I’m doing the best I can. You don’t like how it fits into your schedule or your reality? Then go find another friend, another aquaintance, another coworker, another client.