A short message for the interim

I’ll make this short. I’m not in great shape. In the last couple days, I have been bleeding out of my mouth, but we think/hope that is from seizures when I am asleep. As there are several pieces of skin gone, including part of my lip and I guess the side of my face, which I took off with tweezers as it had been bitten to shreds and was hanging on by a few strands. Today I started bleeding out of an ear.

We hope that with my blood pressure and diastolic spiking that it may have blown something in my ear as I suddenly felt pressure and then went deaf yesterday. So we hope the blood is just old blood from that, maybe a torn eardrum from blood pressure. The color of the blood is dark, which is good.

But it means, when I sleep, and today I slept a lot, the seizures and other things are making me weaker. It means that the autonomic system when I sleep, which was helping me stay alive is failing. I don’t know what to do.

I only have the memory of a few days, but I am much weaker than a few days ago, my raynaud’s has spread from my hands and arms to my torso and heart. My skin isn’t receiving blood. I am scared. But I guess the ride had to end sometime.

I am determined to last until I can get the rest of the packages out; over the last two weeks we have done about 120 postcards. I hope people got them. I am sorry, that I couldn’t do more. I’m sorry if this makes no sense. Thanks for reading. If I last for a while longer, which I am going to try my hardest to do, even if it is lying still and using twitches to communicate. And I will keep trying to find presents for all those who have helped me over this difficult time.

I would like to thank everyone who bought me or Linda items from my amazon wishlist. You rock. Turns out when I die there will be money for the burning. But it is me hanging on that is expensive. For every person who got manga or books, to try and make me forget the pain, to try and give me contentment, thank you. Even when I regress, and am an eight year old with a hoard of books, I know that kind people gave them.

As for those who bought the probiotics, thank you, I would be dead now it if wasn’t for you (I can’t absorb food without them) also, I can’t shit without them. Today it took 250 minutes for me to do what you do in five – take a dump. And it tired me so much my fingers turned black but if it wasn’t for the gifts of people. Even that wouldn’t have been possible if not for the gifts of oxygen from people.

For those who contributed to the medical fund, a special, grateful thanks. Much has already been spent towards Seattle, as it is so many hundred an hour to review the medical data we gave them and the questionnaire, now we wait for the call and try to find a hotel and a way to transport me. Things like wheelchair ramps, pro-biotics, special diet foods, and medicine have all been helped by the medical fund. Thank you all those who have contributed. The doctor did try to give higher doses and in doing so, just on one pill we save $150 for the month (or was I just two weeks?). And for those who contributed for fun, well, I tried to get some nice art for the blog, so I hope that helped. She’s pretty!

Damn, so much for quick. Thank you for the comments, and the community. I may not be able to blog for a few days, if I am in hospital, or um, somewhere else. This might feel like "it" or a "bad place" to me, but I’ve been wrong a lot. Thanks for every person who took my hand when I extended it in friendship, and for those who extended their hand before I even knew them. Even when things got scary, you didn't run, I did. You cried when I couldn't. Thanks for staying.

Two last things, first, The Kodak Digital Frame is on sale, and I will go half with anyone who wants to buy it with me ($59.99 free postage – so 29.99 is your share) to give Linda a digital memory box she can take anywhere (It is on the wishlist). Let me or Linda know. See, here I am leaving an “I’m leaving” message and still planning the future. Second, please send emails or messages to Linda, I think she really, really needs encouragement right now. She seen me bad, but not this bad, and there comes a point where caregiver, friend and lover all get mixed up. She could really use some support right now (email – not flights up here!). She posted last night in her frustation and fear, but has reposted a new post about her view of the night at Girl's Gotta Fly.

Thanks again everyone, I’m sure I will be wrong. I can beat this, I know it, it is just a little dip in the chart. But it hard to argue emotionally with a heart which is beating so erratically I keep passing out, and black hands.

See ya!

Postscript: heart medication needed during the night as heart was too erratic after five hour sleep to keep sleeping. Waking meant onto full flow oxygen as hands are purple but....NOT DEAD YET!