4 paragraphs to explain my disease plus: Love a Puffin, Masturbate and living.

I have just finished a blog post on the Postcard Project,in fact there was ANOTHER postcard project blog before that which I kind of forgot to mention, though I think is it a good post.

“To engage, to start a dialogue and get to know someone is a great joy, a great opportunity. I have been given this chance to get to know so many people…

..But I can make you feel a little less lonely, because I care, and I hope it shows, in a clumsy way, in the postcards I send.”

So please, if you want more Elizabeth, head over there and take a read (and a comment). Also, scantily clad Hawaiian girl if that is an incentive, plus lovely goth postcards! Linda has also written part II of the Flowers of Hawaii over at Girl’s Gotta Fly and I know she would LOVE a comment.

Also, I am sorry but the postcards this week were, um, scanty because after posting 94, I kind of used up most of the postage stamps. Oops.

The BIG news is that I have decided not to die. Sorry, you can get your entrance fee at the door. I didn’t say my body is agreeing with me on that one but I am tired of writing about pain. Geez, I am ALWAYS in pain, so unless I have something new to share, we will assume that, and that probably parts of me are falling off or looking odd or blood is coming from somewhere or another.

But, hey, still have decided not to die (screw medicine!). So I will be doing other blog topics. I will still update on health issues and want to talk about what it is like having a ‘bad’ dementia day: that Alzheimer’s, or Parkinson’s experience which frustrates caregivers. I will try to explain from my notes and experience why we cry over your not giving up toast, or cake, when you actually gave it five minutes ago, or why we call you the name of someone who is gone, dead, and how that hurts you but what does it mean for us?

Right now, with Xmas on the way, I am masturbating, oh yes I am. I woke up this morning and thought, “Elizabeth, what gets you horny?” Good thing I have all these art books. Is getting aroused at an anime drawing a good or a bad thing? I think, since I can’t really move around a lot, a good thing. But that will take a bit more time (please continue to masturbate anyway!). I am studying (rub-a-dub!), I am collecting pictures, I am trying to find resources. Yes, we are too sexy for this wheelchair, too sexy for this bath bench, help me undress, oh yes, oh my!

See, even chronically disabled, or those with degenerating conditions can be horny. Stay tuned for blog post.

I realized that some people may not know what I have medically. BEFORE I was ill, I had Marfan’s and P.A.T.’s due to an extra node in my heart. Marfan’s is a genetic bone and muscle condition which makes your muscles stretch as the genetic switch to stop your bones growing doesn’t always work. So I have different sized bones on my body from side to side, and due to my knee bone growing into my kneecap, I had surgery on both knees. I hyperextend, as the muscles are pulled longer than they are supposed to be, this causes muscle pain, and my knees to go backward, and my shoulder to dislocate more often than others.

Then I developed a disease of Central Autonomic Failure. Autonomic Failure is when the things we don’t think about, from pupils dilating to blood pressure to heart beats, to converting oxygen from lungs into the red blood cells doesn’t work, because that part is damaged. I have both Central and Peripheral Autonomic Failure, plus Secondary Raynaud’s (which means my extremities turn funny colors, are cold and for me, not for those with Raynaud’s naturally, I can have veins collapse and start to rot, and require amputation – like Diabetes – this is another reason to exercise rigorously).

I also have progressing Neuropathy, which means there are 5 different types of nerves, and my nerves are being sort of eaten by the body, so I have limited to no feeling from my HEAD to toe. But think of nerves like a giant road system. Just because thousands are destroyed doesn’t mean that a person driving back roads might not find a way to bring a message all the way forward, particularly if hundreds to thousands of cars start out to find a route. This is what happens to me and to some SCI’s who have a partial or a break with some spinal nerves. So sometimes I close a door on my hand and feel…nothing. But other times, my feet, from the cold, or when I break a toe, I get, a second or two later, a flash of pain, and then it sort of dies out, as other messages crowd out the pain message trying to get through such a odd route. I type 5 times slower because the messages to my major muscles are both slow and erratic (taking the scenic trip on the back roads).

Because I have Hypothyroidism from a secondary Autoimmune disease, it is almost certain from my symptoms and visits to three different hospitals that I have AAN, Autoimmune Autonomic Neuropathy of the vascular centered variant. Only four disease have Autonomic Failure as a primary symptom – one is POTS, Postural Orthostatic Hypotention – I have the Hypotention but I don’t have POTS, or MSA (Multiple System Atrophy), the most common of this uncommon disease, and seen mostly in seniors, with three types, one related to Parkinson’s’ (used to be called Shy-Dragers or Parkinson’s Plus). The Hospital in Vancouver confirmed Primary Autonomic Failure, the Specialist Hospital in Washington State confirmed it is not POTS or MSA. The Hospital here confirmed it is vascular in focus (meaning the veins randomly close, and I get a micro stroke called a TIA, or I get a larger one, or my ear drum blows out, or blood doesn’t get to my intestines, the food rots and I have a gastronasty!). Two down, two remain, which leaves Pure Autonomic Failure, and AAN. But Pure Autonomic Failure doesn’t have Neuropathy or Autoimmune Disease: I have both, so does AAN. These are all diseases of exclusion, determined finally in autopsy (meaning there is no, take my blood and see if the water turns blue test - you match the symptoms until nothing else fits). 90% of PAF people get MSA, the average lifespan of MSA is 4 years from onset of first symptom (not diagnosis), the average lifespan of AAN is about half that (no study of AAN has been done because no one can get enough people WITH AAN together and have enough of them live to the end of the study).

There is no way to prevent this disease. It is really rare. It is like winning the lottery, you don't win the lottery by eating green food, or doing pilates, and you don't get this or have this cured by doing any of that other. Medicine has known about this dying of brain disease for 109 years, and so far, the only treatment is a pill for those with MSA-P, that helps 10%, and now IVIG for those with AAN (plus symptom treatments, like beta blockers, oxygen, pain management, synthoid, and other symptoms treatments) IVIG is a possible good thing because IVIG passes the blood brain barrier and kills the auto-immune system of the brain which is attacking the autonomic section. It is not a cure all, it doesn't work for everyone, but it is hope of stability. And the only hope I have right now (medically).

That is what I have, that is why I stop breathing (because the switch that says, ‘breathing is good’ is too weak to work, or the nerves to my diaphragm stop working, or similar issues, like my heart is too erratic to pump blood around), or get very ill, and can’t sweat and have the air conditioner on when it is –5 outside (I do, seriously!) – turns out that masturbating makes blood flow, increases heat. I have no way of dispelling that heat. I am, this morning going, ‘oh my, oh my, my hands are green and oh, oh, oh, I am sooo close, why am I super heating, don’t think of that, think of the sexy, oh yes, so close’ – followed then by, “Oh shit! I am way, way too hot, I need to do something because death by masturbation is not as wondrous as it sounds.”

Yeah, sometimes it is GOOD when workers aren’t here, as what do I say when I have all my tops off, the air conditioner full blast and a care worker walks in, with me saying with a wild eyed expression, “Quick, get a cold cloth, I am masturbating, and it goes well!” So to recap, postcard project, Hawaii Flowers, not going to die, researching desire, masturbation, more masturbation, and what disease I have. That’s it. Have a great day (oh, computer thing on hold for a couple weeks, and I go in for blood work at 7-8 a.m. tomorrow). Oh yeah, and I'm going to live.