Attention readers: This post contains medical information that may not be appropriate for all audiences. Read at your own risk, or with parental guidance.
It’s nearly 1:00 am and I’m wide awake. I’m also feeling better than I’ve felt all day. But, I’m afraid to go to sleep. For women, one of the challenges of having Hermansky-Pudlak Syndrome is that a bleeding disorder, and having a female cycle, doesn’t always mix.
I can go months and months and things are relatively normal. And then suddenly I can have a cycle from hell! While this isn’t the worst month ever, it’s falling into the cycle from hell category.
I’d been looking forward to my long weekend for weeks. I’d planned to get all the household things I never have time to do finished. So today I got up early ready to sink into my filthy house and get things ship shape again. But, it seemed I could never kick it into high gear. I’ve felt horrible all day, and it’s all female issues I know.
The morning started off with an intense headache. Then my bleeding started becoming quite heavy. I’ve been in the bathroom every 30 minutes to an hour all day. That time of the month also seems to always give me a sensitive stomach, so in addition to bleeding everywhere, I’ve got the runs and am having to constantly empty my ostomy pouch. I felt achy and crampy all day. Housework seemed pretty much out of the question. Running errands was completely out. I couldn’t be away from the bathroom and I just hurt. All I wanted to do was lay around.
The other problem is I’ve felt so weak and tired all day. It’s probably a combination of exhaustion from New Orleans that I’m still not recovered from, perhaps a bit of anemia, and probably something out of balance from the diarrhea.
This afternoon I fell asleep for two hours on my bed (right after going to the bathroom.) When I woke up, I’d bled right through, onto my pants and even the sheets. Thank God I didn’t lay on top of my quilt!
My bed looked like someone had been attacked there!
I don’t know that I’m going to make it to church in the morning. I’m still in the bathroom every hour, so I’m afraid to go to sleep. I really need to do some grocery shopping tomorrow (being out of town my fridge is bare) and I’m not sure that I’ll have the energy to do both. I don’t want to ask anyone to take me to the store because I don’t want anyone coming in this pit, otherwise known as my apartment! It’s bad right now!
If this is falling into the TMI category (too much information), please keep in mind that part of the goal of this blog is to record the experience of having Hermansky-Pudlak Syndrome. For women, this is often part of the HPS party package! No wonder I’m in a funk!
It’s nearly 1:00 am and I’m wide awake. I’m also feeling better than I’ve felt all day. But, I’m afraid to go to sleep. For women, one of the challenges of having Hermansky-Pudlak Syndrome is that a bleeding disorder, and having a female cycle, doesn’t always mix.
I can go months and months and things are relatively normal. And then suddenly I can have a cycle from hell! While this isn’t the worst month ever, it’s falling into the cycle from hell category.
I’d been looking forward to my long weekend for weeks. I’d planned to get all the household things I never have time to do finished. So today I got up early ready to sink into my filthy house and get things ship shape again. But, it seemed I could never kick it into high gear. I’ve felt horrible all day, and it’s all female issues I know.
The morning started off with an intense headache. Then my bleeding started becoming quite heavy. I’ve been in the bathroom every 30 minutes to an hour all day. That time of the month also seems to always give me a sensitive stomach, so in addition to bleeding everywhere, I’ve got the runs and am having to constantly empty my ostomy pouch. I felt achy and crampy all day. Housework seemed pretty much out of the question. Running errands was completely out. I couldn’t be away from the bathroom and I just hurt. All I wanted to do was lay around.
The other problem is I’ve felt so weak and tired all day. It’s probably a combination of exhaustion from New Orleans that I’m still not recovered from, perhaps a bit of anemia, and probably something out of balance from the diarrhea.
This afternoon I fell asleep for two hours on my bed (right after going to the bathroom.) When I woke up, I’d bled right through, onto my pants and even the sheets. Thank God I didn’t lay on top of my quilt!
My bed looked like someone had been attacked there!
I don’t know that I’m going to make it to church in the morning. I’m still in the bathroom every hour, so I’m afraid to go to sleep. I really need to do some grocery shopping tomorrow (being out of town my fridge is bare) and I’m not sure that I’ll have the energy to do both. I don’t want to ask anyone to take me to the store because I don’t want anyone coming in this pit, otherwise known as my apartment! It’s bad right now!
If this is falling into the TMI category (too much information), please keep in mind that part of the goal of this blog is to record the experience of having Hermansky-Pudlak Syndrome. For women, this is often part of the HPS party package! No wonder I’m in a funk!
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