george is here.

George showed up yesterday afternoon, a full week late. This was the first time in many, many years that I wasn’t worried about being pregnant. I knew george was late due to having come off The Pill.

My first word was, “Finally!!”

But then the pain started to set in within the hour.

I let my boss know that I might not be able to finish out the workday. I was wrong – I got through the rest of the workday. I even stayed 45 minutes overtime, in order to empty my inbox and get through all of my escalations, in case I had to miss work the following day due to the pain. I sent an email to the support managers group to let them know I might be out sick the following day.

Soon after sending the mail, the director of Support came by and said, “You can’t afford to be out sick.” He had a slight smile when he said it, so I know at the very least he was half joking. He is known for his joking and teasing. But the timing of his comment was bad, and the comment itself was uncalled for. I wanted to reply with, “Can’t afford meaning financially or meaning job-security-wise?” But alas, he is the director of Support, and my reply would be out of line and I’d be further red-flagged due to attitude problems.

Instead, I replied with comments that the only option left for me is more surgery for my condition. I told the director that it’s very difficult for people around me to accept that I’m sick, because they see me sitting at my desk without a visual sign of malady, talking on the phone in pleasant manner with customers.

The director understood, because he replied with, “But inside, you’re dying.” I nodded. I know he understands all too well – his wife has the same disease as me.

But that doesn’t mean he’ll keep me on as his employee just because he understands my disease. He has a department to run, after all, and I feel like I’m screwing up his numbers by missing work several days per month due to my pain issues and doctor appointments. It’s an at-will company. They can let me go at any time for any reason, “no hard feelings”.

Earlier in the day, out of the blue, my immediate supervisor asked me if I still planned on taking a trip to Portland at the end of this month. I was stunned. I said ‘yes’.
She must have known I was thinking WTF? Of COURSE I still plan to go to Portland! I’ve had this trip planned for months!, because she elaborated on why she asked her question. Apparently, I’m running out of Paid Time Off (PTO) days due to all the time I’ve taken off for pain and doctor appointments.
I told her, “well, if it turns out I have to take time off for pain or other reasons, I’ll take it unpaid if I run out of PTO days.”

She wasn’t happy to hear that, but that’s too bad for her. They act like if I run out of PTO days, I won’t be allowed to take a day off – like I’d be committing some sort of felony. Well screw them. I have not one but two vacations planned this year that I told them about BEFORE getting hired. If I have to take the time off unpaid, I will. Screw their bullshit. They KNEW I was scheduled for surgery before hiring me. They KNEW about my disease before hiring me.
NOW suddenly it’s a problem for them. Screw them. I don’t plan to be there, either by their own doing or mine, by the time my second vacation rolls around in October.

When I finally left work for the day, I took an Ibuprofen 600mg pill. I wanted the Tylenol 3 but that would make me too high to drive home.
When I got home, I took a Tylenol 3 for the pain. When my man got home, I vented to him and cried about the insensitivity of management at my job. We talked again about me taking a lower paying job or a part time job closer to home.
Our next step is to go through both of our budgets to see if this really can be worked out for me.

This morning I was awakened at 5am with searing pain and flooding bleeding. Of course I took the day off work. When I called my boss to let her know, she told me she’s going to have to go through my PTO and she may have to dig into my “mental health” days to approve the time off. I told her to do what she needed to do.
Again, WTF. I will take the goddamned day off no matter how you mark it, lady. I’m not well. I’m bleeding like a stuck pig. I can’t even sit upright in a chair.
I’m typing this journal entry from bed on a laptop, high as a kite on Tylenol 3.

GAH. I’M SO PISSED OFF.

I’m not just pissed at work. I’m pissed at george.
I know that the aim of surgery was to provide me with a diagnosis, not a temporary cure. But I also know I’d hoped for temporary relief as a result of surgery. That little bit of hope crept in and allowed for me to be let down. I feel so let down.

Since surgery though, I’ve felt the need to seek out other people like me. I never bothered to do this before surgery, because I felt like I couldn’t say for sure I have Endo. Now I have the license as it were. The official diagnosis.
I’ve been reading life stories of people on various Endometriosis forums. I’ve cried at the similarities. I’ve become angry for women I don’t even know, who are going through worse injustices with family, partners and workplaces than I’d ever experienced.
I am very lucky to have a man who truly sympathises with me and who is there to care for me when I’m ill. Some women don’t even have that.

I want to create yet another forum. I want to create an entire non-profit organisation built around legal advice, medical articles, the disinformation surrounding hormones, pain meds and old wives tales (“get pregnant, that will cure the Endo!” is STILL being used by doctors today!!!). I’ve been searching the web and so far all I see are support groups, which in and of itself is a good thing. But I don’t see an information center yet. Maybe it’s there and someone else has realised the dream I have. If not, I’m going to have to invest the time and energy into creating this.

I saw my masseuse last Saturday. She said I’m still in a place where I’m letting the disease define me. She is right. She says she doesn’t want me to manage the pain. She wants me to overcome it. She is right.
She suffered for years with bad Endometriosis. She had a hysterectomy, though. I don’t want to do that because I don’t want to take Hormone Replacement Therapy (HRT). I view that as playing into the male medical establishment – taking their dangerous medications, which cause worse things to happen – like cancer, strokes, blood clots in the legs, and mental health issues. If I can’t even handle the birth control pill without becoming suicidal and homicidal, what makes you think I can handle taking HRT?!?!?

I’m glad she’s able to have recovered. I don’t think I can go the same route she went. Therefore, I’m letting the disease define me.

This makes me very angry. I’m tired of proving to people that things they suggest won’t work for me. I’m tired of being told, “oh just try it” and then my life becomes a worse hell because I’ve “just tried it” to appease non-believers.

I want to say everyone just leave me alone.

I have an incurable disease. I have the right to bitch about it. I have the right to a pity party. I have the right to be sad and mad. I have the right to choose what pain management road I will go down. I have the right to refuse advice. I have the right to do what’s best for me.

3 Responses to “george is here.”

  1. Mel

    I wish I had something wonderful to say to you! I don’t of course. I can empathise…. I have known/know women who suffer from endo and the horrid stuff they go threw with.. you just make it more.. real?

    I have nothing… I just so feel for you? It isnt sympathy alone.. you’re too smart, too sassy, too compassionate… I know how much fun you would be to play with on a Friday night…I got nothing. I just wish we could throw rocks at the water together for a few moments….

  2. zept

    Thanks, Mel – your empathy is valued. One of these years, I will get to Australia, and we will hook up and have a rip-roarin’ time!

    Oh, and regarding comments you made about redheads a couple of months back, tell your daughter that the taunting she goes through is shaping her into a Warrior Woman. We don’t give up easily – we’ll show the world!

  3. Mel

    Tis a date then… My daughter’s can throw rocks just as well as you and I can.