Monday, October 18, 2010

Looking at Edema, circulation problems, follow-up to pain and Sakura-con hopes

Welcome to the online Mystery Spot! Yes, houses are tilted, cars roll backwards and legs swell and drain in hours. I don’t how many have visited a ‘mystery spot’ – I have! I have! The ones with optical illusions. Sort of like a fun house except without the wobbling walkways and rolling barrels to get out. The barrel has always defeated me.

One of my first ‘funhouse’ memories was the Canadian PNE (a travelling summer fair), where I did everything really well, including the spinning optical tunnel with wind until it came to leave. There was a tumbling barrel, like a dryer, and no matter what I did, the thing just kept flipping me over, I tried to escape by reaching out in hopes of grabbing a handrail to pull myself out. But no go. There was much amusement from people waiting in line.

I go to Wales, there is a carnival faire that comes at Xmas and they have a fun house. In the UK, or in Cardiff at least, there are two amusements: one is to GO on a ride, and the other is to hang around with drunk friends and laugh at and harass people on the rides. So each ride has a crowd of about 40 people + in front of it just watching. And Linda and I decide to go on the fun house. Same thing, I am stuck in the barrel, luckily Linda pulls me free, to much laughter from crowd. I am mortified and disappear until the New Year approaches when we are approached by a guy who wants us to say hi to his girl friend on the phone...then he wants to kiss us. This random kissing thing from guys is a reason we stopped going downtown on New Years Eve. But help yourself to 'random drunk kissing' if you are in the area.

Sorry, beyond memory lane, I wanted to show you the edema, which is the pooling of blood/liquids in the arms and legs and sometimes torso. The day after the pain drain, I was on the edge with my body in shock almost constantly, shivering, and overheating at the same time. I slept most of the day woke up and my legs were like this. As you can see, one is THIN (thinner than I have seen in a long time) while the other is twice the size (with some very large and odd bruising). Later in the day, the left leg swelled back up again.

Also, the hands. This is within three to five minutes of waking up, and though the camera has ‘intellegent auto adjusting’ which is to make people’s skin and body look…well skin color: you can still see some wacky Reynaud’s in my hands and on my left hand, in the finger cuticles, you can see the purple/blue, while the right hand is pink. In reality (hard to capture on 'smart cameras'), my fingers of one hand were dark purple and the other hand was rosy pink to bright red (sometimes the hand just turns fire engine red). We use the ‘mood ring’ of the fingernails and lips to determine whether to go on oxygen. If it is pink to red, I am good, if it is purple, add oxygen, if it is blue, add more, and if it is black, um, worry a lot. Usually I wake then in an hour or two my body can’t sustain the transfer of oxygen from my lungs to my bloodstream. As you can see, even on waking, I wasn’t able to do that. Also, I had diaphragm difficulties that day (unable to swallow, unable to talk, and belches from trying to breath and breathing into the stomach instead of the lungs).

BUT, I went to sleep again and if I woke up the same I figured, “well, it has been a good run”, but I was able to not superheat, and got a bit more of endurance. I am still too weak to shower, but I am breathing, and not hallucinating quite as much: I was apparently frequently saying, “I am not an octopus, don’t make me into little balls and eat me!” (a treat at Japanese Festivals). Still, Eiki Eiki and I spent lot of quality time together in sleep mode.

While in recovery Linda has been helping me (watching episodes of 'Psych'), like here where we are playing cards.See the serious expression? That is because we are betting pocky (see it at the bottom of the picture, right next to the melon soda)! And I am out of dark pocky! But I do have Melon Soda, thanks to Cheryl picking up some in Seattle and bringing it over a while ago. I like Melon Soda.

The goodish news is that we have contacted the makers of one of my nighttime painkillers and they have faxed a sheet to one of the doctors who agreed to fill it out. Once they send it back, I get three months of compassionate medication. Which is WAY better than the 6 days of samples I have right now. So hope is on the way.

Also, thanks to some surprise donations (really, thank you!) we priced up Lyrica and the alternatives for nerve pain online. The problem is, we know the reactions to the other medications, and only Lyrica and one other can be used as a single pill for an anti-seizure medication AND a nerve pain medication. While two other popular nerve pain meds have seizures as a common side effect. Which means I would need a nerve pain pill and then two anti-seizure pills.

So a couple hours of research and options later and It turns out, eliminating the drugs I have bad side effects with, that Lyrica is the still best option. We found that the price is the same whether you get 84 of 25 mg or 300 mg pills. So we are going to order from a company we already use online (I am supposed to be 300mg+ a day). There is no generic for Lyrica (and won’t be until 2013), but the amazing display of kindness with surprise donations will cover an order for three months worth of the medication at the level I am on (plus we eliminate the $30 per month ‘filling fee’) - making it almost half price of what we pay now. So that is another week or two away, to survive, but we found six more pills, so now I am on 35% of the doctor recommended dose, which covers about 50% of my pain.

So the hope is to keep working towards a Fentynal patch, as the pharmacist says they can start at a very, very small dose and the patch can be applied even when I can’t move or the pain is so bad that I am not making sense or with diaphram problems and unable to swallow. Plus they last up to three days per patch. So, we have hope that, thanks to the kindness shown, we will have three months to work out getting the pain problem addressed with, and Linda some temp work to help income.

For me, I am ‘making money’ by reading manga. Yes, I am having a sort of final manga sale, which has me reading what I have so that I can sell a host of sets, many of them out of print. We will do that the end of the month, I am also selling my books at the Book and Paper show in a week. So as I say, it is what it is.

I plan and hope to go to Sakura-con this spring.Though not with the strange bulge 'down there' that so many anime girls have, which convince us that the illustrators must never really have seen females in that kind of 'having a girlfriend' way (a real one not a blow up one, says Beth, who has a body pillow on her bed with a girl in lingerie titled 'The Bridal Night') Why? Because most females don't look like they are packing for a drag king performance later (or was it the size KK breasts that defy gravity that clued us in, hard to say - but if you can place a dinner tray on your breasts stable enough to eat a three course meal, you either need breast reduction or you are an anime girl).

Because I was too sick to go to boxing this week, I need to get strong enough to go and sweat and get my circulation in action to keep me alive. Alive is good. And as someone pointed out to me, Hope is the key. To look at a future filled only with stop-gap issues where I am constantly in terrible pain until I eventually die is NOT something that I can keep doing, or something I think anyone can keep doing. For me, the mental refusal to stop, to quit, as evidenced by boxing, by trying to wheel outside 2-3 times a week and by getting out of bed every day, is critical to avoid quick deterioration. So though this MINUTE, Sakura-con looks a long way away and has a lot of things in my life to stabilize, I believe I am going to go, and with Linda and Cheryl. This year we can see the Cos-play chess!

There is now, which is important to live in, but there is also the future, and if there isn’t much hope NOW, then I need to find a future and what needs to be done to find that hope. Back to work at the ‘manga mines’


Raccoon said...

So, other than that, how was the play, Mrs. Lincoln?

You should have received mix berry pocky by now. Hopefully that will work as well as chocolate.

And congratulations on the medication. In three months, after the compassion medication runs out, can you file for it again?

tinarussell said...

I think I read about the Mystery Spots somewhere, so after your post I looked on Wikipedia to find out more. Wow... how cool!

Beth, do you know about Wikipedia’s “Unusual Articles” list? You can find it here: It’s full of wonderful and esoteric knowledge of all sorts. I think you’d like it.

As a trans woman without bottom surgery, no amount of tucking (though it helps) can completely rid myself of _the bulge._ It is actually nice to remind myself that this just means I must be a manga girl :D

Baba Yaga said...

Hooray for painkillers.

I remember going headlong into a glass wall in a hall of mirrors at Morecambe funfair (which I think is now a supermarket and some houses, but anyway defunct). Ouch. I remember that there was a ghost train, but nothing about it.

wendryn said...

Pocky! :)

I will keep hoping for better drugs and less pain, more breathing, more rest, and more energy.