I think I’m going to have to admit it. I’ve got to have a talk with Dr. Meredith. (Dr. Meredith is the only OBGYN I know of in the country who has taken on the needs of women with Hermansky-Pudlak Syndrome.) This is the third month running that my female cycle has been, well shall we say, over the top.
Yesterday, after a night of bleeding that required me getting up to deal with it about every hour, I seriously considered staying home from work. I’d put in enough extra hours this week that I really only needed to work about three hours anyway to be at my 40 for the week – and I had enough that I could do from home that I could easily get those three hours taken care of. It seems silly to go to the bother of going into the office when you feel like you’re going to be constantly in the bathroom anyway. And, I was incredibly tired.
But, always afraid of using too many days, afraid of the political implications for my job if I’m seen to be gone too much etc. – I went into the office. When I got there I discovered my boss had decided to take the day off. She was entitled as she’d worked late several nights on the magazine – but if I’d known she wasn’t going to be there I probably would have stayed home too.
So, I was at work. I was physically sitting in the chair anyway. But, I was tired – really tired – and still bleeding a lot. I had to go to the bathroom about every 45 minutes even though I was wearing the thickest pads I could find. I was completely saturating them.
One of our upper executives has accepted a job with another company, and there was a farewell for him in one of the large conference rooms. The receptionist announced it over the intercom. I heard everyone gathering as it was just down the hall from my cube.
But I didn’t go.
How do you explain to co-workers it isn’t that you don’t want to be social or friendly? It’s just that I felt so weak and I didn’t want to stand around in a crowded hot conference room while all the speeches and toasts were being made. Yet another occasion where I’m sure my behavior is completely misread.
While I’m sure this executive probably knows who I am (I sort of stick out and I don’t sit too far from his office), he’d probably be hard pressed to know my name or what I actually do there. It wasn’t like we were buddies or anything. So, after I heard all the applause die down, and saw the crowd thinning out a bit, I got up, went and shook his hand and congratulated him on the new job, got a glass of punch and cake and returned to my desk.
By noon I could have left, but I was starting to feel a little perkier and a cab home is $25. So I stayed.
The feeling better part was short-lived though. By the end of the day I felt down right horrible. I caught the earliest bus I could and went home.
I took my medication and went straight to bed. Not only was I still bleeding heavily, but now all my joints ached. And not just their usual annoying yet easily tolerated ache. This hurt.
I got up about 10:00 pm, took some Tylenol and a shower, but I was bleeding so badly that the water from the shower wasn’t even enough to wash the blood down the drain. I had to clean it out of the bottom of the shower after I was finished.
The same thing happened this morning. And, this was with the DDAVP – so I guess that is no longer cutting it. I think I’m going to have to investigate the Murina IUD. I don’t know why I’m such a baby about this. I just need to suck it up and call her to talk about it.
I need to figure out if I need to try to get Dr. Meredith to put it in at NIH. Technically, NIH is not a treating hospital. It’s a research hospital so they’re not technically supposed to provide treatment that isn’t part of a protocol.
The problem is most health insurance, including mine, doesn’t cover birth control. For those of us with bleeding disorders, this is really irritating. I’m not married. I’m not sexually active. I don’t need birth control for the usual reasons. I’m having a completely medical need here, but I’ll likely have to argue it with insurance anyway. Who knows how long that will take? Groan.
Still, I feel a little guilty whining. There are so many people in HPSland with much bigger problems than this.
Yesterday, after a night of bleeding that required me getting up to deal with it about every hour, I seriously considered staying home from work. I’d put in enough extra hours this week that I really only needed to work about three hours anyway to be at my 40 for the week – and I had enough that I could do from home that I could easily get those three hours taken care of. It seems silly to go to the bother of going into the office when you feel like you’re going to be constantly in the bathroom anyway. And, I was incredibly tired.
But, always afraid of using too many days, afraid of the political implications for my job if I’m seen to be gone too much etc. – I went into the office. When I got there I discovered my boss had decided to take the day off. She was entitled as she’d worked late several nights on the magazine – but if I’d known she wasn’t going to be there I probably would have stayed home too.
So, I was at work. I was physically sitting in the chair anyway. But, I was tired – really tired – and still bleeding a lot. I had to go to the bathroom about every 45 minutes even though I was wearing the thickest pads I could find. I was completely saturating them.
One of our upper executives has accepted a job with another company, and there was a farewell for him in one of the large conference rooms. The receptionist announced it over the intercom. I heard everyone gathering as it was just down the hall from my cube.
But I didn’t go.
How do you explain to co-workers it isn’t that you don’t want to be social or friendly? It’s just that I felt so weak and I didn’t want to stand around in a crowded hot conference room while all the speeches and toasts were being made. Yet another occasion where I’m sure my behavior is completely misread.
While I’m sure this executive probably knows who I am (I sort of stick out and I don’t sit too far from his office), he’d probably be hard pressed to know my name or what I actually do there. It wasn’t like we were buddies or anything. So, after I heard all the applause die down, and saw the crowd thinning out a bit, I got up, went and shook his hand and congratulated him on the new job, got a glass of punch and cake and returned to my desk.
By noon I could have left, but I was starting to feel a little perkier and a cab home is $25. So I stayed.
The feeling better part was short-lived though. By the end of the day I felt down right horrible. I caught the earliest bus I could and went home.
I took my medication and went straight to bed. Not only was I still bleeding heavily, but now all my joints ached. And not just their usual annoying yet easily tolerated ache. This hurt.
I got up about 10:00 pm, took some Tylenol and a shower, but I was bleeding so badly that the water from the shower wasn’t even enough to wash the blood down the drain. I had to clean it out of the bottom of the shower after I was finished.
The same thing happened this morning. And, this was with the DDAVP – so I guess that is no longer cutting it. I think I’m going to have to investigate the Murina IUD. I don’t know why I’m such a baby about this. I just need to suck it up and call her to talk about it.
I need to figure out if I need to try to get Dr. Meredith to put it in at NIH. Technically, NIH is not a treating hospital. It’s a research hospital so they’re not technically supposed to provide treatment that isn’t part of a protocol.
The problem is most health insurance, including mine, doesn’t cover birth control. For those of us with bleeding disorders, this is really irritating. I’m not married. I’m not sexually active. I don’t need birth control for the usual reasons. I’m having a completely medical need here, but I’ll likely have to argue it with insurance anyway. Who knows how long that will take? Groan.
Still, I feel a little guilty whining. There are so many people in HPSland with much bigger problems than this.
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