As you may have noticed, I haven't been very communicative on social media, or in my personal life, for the last several weeks. I've been in survival mode during all of this and haven't had a chance to share or process everything I'm going through at the moment. Hopefully I'll be able to do a bit of this here.
A lot of you will know that I fought like hell to get out of being stuck in bed every day. Lately I've been back in that place, stuck in bed, with a few wonderful exceptions where I've managed to spend the day on the sofa instead. It's been pretty brutal to be back here, if anything it hurts more psychologically because I had a little taste of freedom that I don't have right now.
The need to go on bedrest started after the brain bleed I had in 2010. I have an AVM and a cavernoma in my brain, both are amongst the seemingly countless congenital malformations I was born with, as a direct result of my father's exposure to chemical warfare in the Vietnam War. This connection, amongst others equally significant, is what made me grow up trying to understand war, from my teens into the career I've shaped as an adult.
I thought I'd share a bit about what's been happening with me most recently. Full disclosure: I'm going to be talking about women's health issues here as well as the nice safe ones that we share with men. If this makes you feel squeamish you might want to turn back here.
Oh where do I start?
Issue no. 1: My neurologist instructed me to double my dose of Candesartan as a preventative measure for my chronic migraine. Because Candesartan is often used to treat high blood pressure, naturally one of its side effects can be to make BP go TOO low. I have always had very low blood pressure so starting out on this increase in the dosage I was instructed to check my BP at home and keep an eye on it, so we could stop the increases if it gets too low.
Well guess what? My unruly body decides it isn't going to work the way everyone else's does. This is why so many doctors haven't taken me seriously, because they don't understand how different I am because of the dioxin in my system. My BP immediately got so high it's within the levels for stage 2 hypertension. Today it came in at 152/88.
I called my GP to report this change and she had a hard time believing me, saying that perhaps it was stress causing the high numbers, even though it's kind of the other way around, I'm only stressed because of the numbers. Yes, I have a fair amount of stress in my life, but I feel like I'm coping really well with it and I don't agree with her assesment. She said its probably a fluke and to monitor it for one more week, then get back to her. Well I'm about 3 days into that week and clearly its still a problem. I don't know how to handle it other than try to be nice and calm and wait until next week, when I'll speak to the GP again, and maybe another week of high readings will convince her to look into it. It seems so strange that this happened just when we were looking out to ensure my BP doesn't go too low.
Issue no. 2: A while ago, maybe 6 weeks or so, my GP ended my birth control prescription, on the basis that I hadn't had a period in 18 months so I'm well into peri-menopause. Well that was a mighty big mistake! Stopping my birth control started what has been a nightmarish time when for 5 out the of the last 6 weeks I've been dealing with very heavy bleeding. I went back onto the pill within the same week of coming off it to try to get back to some stability. The bleeding and cramps got so bad that during the same appointment with my GP last week that we discussed the BP issue, she gave me a prescription to slow the bleeding, which thankfully has worked.
This coming week is going to be very difficult for us as a family. Amongst a couple of other things, which I'll get to in a moment, I have a blood test on the 16th and an ultrasound of my reproductive system on the 17th. In the meantime I'm dizzy and tired all the time, with terrible head pain if I move too much. All of which is pretty triggering because its exactly how I felt before I had the bleed when I was 30. I won't lie, I'm scared. I'm terrified of the AVM bleeding again and leaving me in even more pain and disability than the last one did; or worse.
Monday my husband Matthew is having his appeals tribunal for disability support, for his rheumatoid arthritis and COPD. It's help he deserves and merits and I'll be testifying on his behalf. So that's a big concern.
Last week, on the 10th, Sylvie went into the vet to be spayed. Unfortunately upon examining her the vet discovered she's having a phantom pregnancy and she can't be operated on until her hormones are stable. So they sent her home with a prescription to stabilise her, and we're taking her in (also on Monday) to see if they worked. If so then they'll spay her right away, most likely the 18th. The medication she's on makes her throw up a lot and shiver and she's generally been feeling pretty low too. So we're a very merry household!
The only one of us in robust health right now is Alex, which I'm forever thankful for. He's in his second week of his second year of college and studying hard, as well as being an enormous help around the house. It would be impossible to count how many times I've thanked God for letting him be well. He has double scoliosis, which is also connected to his grandfather's exposure to Agent Orange. I lost my nephew, who I loved more than I could ever say, to cancer when he was only 11, so I know what it is to lose a child, its a loss you never get over. Every day I pray for Alex's safety, in every breath I take.
So yes, I've been under a lot of stress, but mostly I just feel sad and a bit defeated, which I know will pass with time. Giving up is one thing that isn't in my DNA. I haven't been able to do any writing work which really kills me, but I know I'm doing the best I can.
It goes without saying that as far as the greater world goes, it's impossible to look up and about without feeling some despair. Following the war in Ukraine, with the recent involvement of Poland and NATO, plus the utter chaos that my home country has descended into, is pretty terrifying. If ever the world needed a stable United States it would be now, but sadly we're not there. Putin knows that and he's going to go as far as he can to get what he wants: A Russia restored to its imperial and communist borders, with him in Stalin's seat. For me this doesn't feel like a far off conflict that has no effect on me, I think I've studied too much military history for that. I'm a living, talking example of the far reaching consequences of war. Here I am suffering in 2025 because my father was sprayed with dioxin and napalm in the 1970's.
So that's where I'm at right now. I don't have a message or anything tidy to end this blog with... only a desire to share and reach out to others, you reading this. I hope that wherever you are you're safe and well - happy is a great bonus but sometimes we just have to ride out the sad times.
Thanks for reading, and wishing you all the best.
Erin
