Friday, May 29, 2009

Cat visit plus my body loses function. Linda and I face the unspeakable D. word in our own ways.

Tuesday or Wednesday I had my visit from the cat group. They have gone into children’s hospitals, and they go to nursing homes, I am their first personal visit for I guess people who can’t get out much. The cats have all the shots and a ‘passport’ (I assume that is for health?), and then have to pass a series of personality and how they interact in groups and loud noises. The cat which came with her owner was some long name but we just called her Hooch.

Hooch was very interested in exploring (and shedding, NOW our place feels like we have a cat!), it really did like to see everything. I liked the cat just being around, I didn’t need to have it bond with me. Because it didn’t. It would rub up against Linda or the owner’s legs but whenever I picked it up it never even looked at me. It never even checked out my socks or my legs which the owner said it ALWAYS does. The owner was somewhat mortified and wanted to bring another cat next time. I told her I liked Hooch, I could tell what she was thinking very quickly. But she could SEE me far away but not close up. It was very strange. Linda was telling her about how animals and kids like me. I think Linda was a bit embarrassed too that she had set this up and this cat didn’t want me, one point it hissed. I was fine with it, as I know that the first rule of cats is, they don’t do what you want them to, they want to do what they want to do. I moved the wheelchair to see if Hooch was frightened by the wheelchair and then I dangled my hand, and it would see it and come, but then as it got close it would walk right by.

Finally, I figured out what the problem was: I have no scent. I do not sweat, not in my hands, not in my fingers: nowhere. So what I eat doesn’t come out in my sweat, I have no scent whatsoever. I am like a tree. Poor Hooch could FEEL the fingers but it was like being picked up by a ghost. It didn’t rub against my legs because it couldn’t tell the difference between them and the furniture, they had no scent. So I went and got some of my older wheeling gloves, the ones I would wear for badminton and I had her sniff those and suddenly it was like she should see me. She came to me, she let me scratch behind her ears because she had a scent. I told the owner next time I would wear the gloves the whole time. Hooch, now that I was around, didn’t want to go, also wanted to see more stuff. So the front body carrier she was pushed into, she kept figuring out ways to stick her head out. And the owner kept stuffing the head back down. I know, cats doing something unpredicable...who would have imagined? I felt bad for Hooch – find a place that has lots of little spaces to explore and you get your head stuffed down. Linda on the other hand thought it was like watching pop-goes the weasel. Linda doesn’t identify with the cat, that’s just her way, growing up on the farm. For me, I like to know what makes each individual animal scared or happy and try to have a positive interaction.

The pictures above are NOT good pictures of me, or rather they ARE, they are pictures of how I used to look before I got a lot sicker than I was then, a lot thinner. After two nights of no sleep and a bowel evacuation which INCLUDED food eaten but not yet processed I was, and am now looking at coming off a week where I was lucky to have a meal a day, missed two days entirely and now have not processed any food since Sunday. It is not pleasant having the cramps but less pleasant watching bite size portions of meals you just ate hours ago, or half a day go coming out of you. And having a fever while you watch, and moan. You don’t need to have someone tell you that something is very wrong.

I thought, the next day, after the fever finally broke that it was okay, but last night, with a night nurse here, it started again and I lost all food I had eaten that day. I was eating and yet starving to death while working hours on the toilet and though I look thin with cheekbones and collarbones in the pictures, it is nothing like now. I had a high fever, my autonomic system unable to regulate many systems at a time. I slept, and slept. And drank gatorade to get some electrolites in me. The first few days I had been dizzy all the time and that came and went sometimes when the fever was bad. But it wasn’t an ear infection, just a loss of ability of my body to send blood to all the portions of me. This day it was smoothies and soap, anything to keep nutrients down and better yet, have them maybe stay long enough to give me strength. The night nurse told Linda she was shocked at how weak and thin I was in just three days (when she last saw me).

Too late for a hospice, I was fearing, and each day another blaster of a hot cloudless sky. The heat made my arm expand SO FAST it burned the metal clasp of the watch into my arm, just like a brand. And I keep it loose for when the heat makes it expand. I was scared, because it seemed like the wheels were stopping, and things were shutting down and I wasn’t ready for that. I wanted to go back to living on the border; I mean, yeah, I stopped breathing for two hours on the weekend, which is never really a good sign, when people have to breath for you, or devices have to, or when you can’t become conscious. Linda was so angry at me, when I finally could sit up. And I told myself never again, never would I make her watch me lying on the floor for over two hours, cold, pasty. Except now...

We each have, in our own ways, been saying our good-byes. I thank Linda, she thanks me, she touches me/she doesn’t, she cleans for no reason. She is scared, she had thought we had a year, a year is a lot of days only now I get worse each day, dramatically worse. I am scared; once I go to hospital, I believe I will not leave, my body will not rejuvenate itself anymore, if it does not do it tonight how many days do I have?

My urine has no color, it is transparent, this is a sign of kidney failure. Linda checks my eyes for rings, though I still have a fever, and am rather loopy; yellow rings will tell if there is toxin build up, then the jaundice. We watch the pee, debating if this one has a slight tinge of yellow.

Autonomic Failure attacks the basis of all medication. Medication is based on the idea that through an accident or experimentation, if you give the body X, the brain will tell the heart or some other part to do Y. Except that is the part which is liquefying, and a jumble. I take a dose they give ‘grandmothers’ for beta blockers and it makes me comatose. I am supposed to take 1, then 2, then 3 of stool softeners. It will do nothing to my bowels, I am told. Cheryl gives me .25 of ONE pill and three days later the cramps after 12 hours of taking dumps are still going, even with nothing left to go. I go into the hospital and they will find many, many things wrong and unless they have a doctor on hand who understands exactly what that means, any medication they give me in a normal dose is as likely to kill me, or cause a cascade reaction as help. A blood transfusion would, as it is not anything which requires the brain to intervene.

We hope the second night was due to an inflamed intestine and raw vegetables from a salad irritating it. We hope. I hope. This is nothing about fighting against the dying of the light. This is biological, exhausting, passing out, in one case I shat myself, literally (a horrid experience) and knowing each day that knocks me down farther will take 2-3 more to get back up. We have been using up a lot of Florastor in hopes it can help me absorb SOMETHING. If you want to help, it is toward the bottom of the wish list page.

I had wanted to go to a different farmers market this Saturday and take pictures for you all. I will be in bed. We are going up away, while they do construction and demolition here, and it was to be a time of together. Right now I am still going in an out of fever. Will I still have it when we go up island? I just want to go back to having no energy and fighting with it all, fighting with trying to get help. I want to go back to being able to push back my nap an hour and get a lecture. That’s is now the good life. I dreamed I was sword fencing. It was a dream; that is not the good life for me anymore. ANY life where I can be with my online friends, where I can have enough energy to write them, and to read what they write me. ANY life that has Linda in it and Cheryl (even if that is me hiding, too tired to fight). That is the good life. Please, please let me not crash tonight but sleep in a bed for the first time since Sunday/Monday.

This is what good-bye and being terminal or having these episodes is about – it is just hundreds and hundreds of minutes of wondering and fear. Hundreds and hundreds of minutes of trying to do what you can and hoping that is the right thing.

I want to be here, where I am. And this week, if I can stay at home, I guess less postcards will get done. Maybe they will bring the stuff to my bed? But I had wanted to send out lots of presents. I like sending out stuff. Children like presents; they like to get them yes but they like to GIVE them too, from objects to hugs.Little notes of ‘I love you.’

That is what all those things I send mean, they mean, ‘I love you, I care about you.’

I don't have big dreams, but they are dreams. I realized there are shows I want to watch with Linda. Plans I had made for both of us and not told her. But each day, as I get worse, and weaker, they crumble; maybe not a year but a few months, then maybe just a month. Oh God, let me read the manga I ordered; watch the DVD set I got? Let me make it Luminara.

Finally, 'let me make it to the weekend, when Cheryl can be here.' So many people left to send cards and gift to. I never wrote that letter to Cheryl and Linda. Oh shoot where did I hide that present for Linda? The realization this IS a body that is breaking apart, and I don't get to determine how fast. Yeah, so now I will sleep, hoping that tomorrow takes me one inch closer to the ‘normal’ of being terminally ill. Only now do I realize how much I depended on that slow decline, that almost static state.

I do not know what lies ahead but as long as I am here, I write. I pass through each day, each benchmark, each Torii, looking ahead to know that there is another. Hoping and believing there is another. Linda talks about making sure I get my food by time X….once I get better, because spending too long looking at now hurts too much. She moved furniture today, redid the whole living room.

I guess I cover myself with plushies and hope for the best. The soup is staying down (knock wood). I wish I could wake like this, covered in a litter of exploring kittens and mother trying to get them back and keep them from crawling away and all over (good luck!). That would be my dream. It isn’t big things when your don’t know if your organs are shutting down for good, it is the small ones that matter so much.


SharonMV said...

Dear Beth, I wish you a bed full of kitten friends to sleep with you, warm you, lull you to sleep with their soft purring. I'll send Chloe there in spirit. I will cling on to my small round black box.

Please sleep dear friend under your coverlet of soft furred kittens and be better.

JaneB said...

Hugs to you, to Linda.

Don't know what else to say... but I'm here, and you have given me so much.

Baba Yaga said...

Oh, my, Beth.

I've got used to you coming to what looks like the brink, and somehow turning it into safe(ish) ground. This sounds rather too much like hanging over the edge.

I'd love to have comforting words for you (and Linda and Cheryl), but sometimes those things ring so hollowly, they have rather the reverse effect. So here, willing you the weekend if nothing more, and more time for dreams (yes, small ones latter a lot!) if only your body can be made to accept food.

Clever of you to work out what was bothering Hooch. I agree, part of the wonderful catnes of cats is their determination to do what *they want.

wendryn said...

I'm glad you got to meet Hooch. The pictures you chose to illustrate what you are dealing with are very evocative and expressive.

I hope that you can find joy, even now, even when everything is so awful.

You are an amazing, interesting, and incredibly brave person.

I wish there were more I could say, but I am at a loss for words. Still reading, still here, though.


Stephanie said...

I am buying you a bottle of Florastor.

Poor Hooch, not being able to tell that you're there. That must be a scary thing for a cat. A scary thing for you, too. I fear for you, Beth, and I hope and hope and hope and hope you get better this weekend. Slow down on the degeneration again so you can accomplish more of your dreams.

Sending positive thoughts & love.

Lene Andersen said...

Screw postcards, having you here is so much more important. I know they are your gifts to us, but you are the best gift I could ever wish for.

I do hope you stabilize a little more, that your body stops doing this crap. Those pictures in today's post were too ethereal, too distant. I need you here, sweetie.

I'm so glad you found a way to connect with Hooch - how clever to think of the gloves.

Stephanie said...

Oooh! Tortoiseshell kitty cat!

I have 2 of them myself. One, Sassie has been always been very outgoing I think would have made a great visiting cat. Unfortunately, now her health is failing and in the past few months her weight has dropped from 12 pounds down to 7.5. I am taking her in for a blood test tomorrow. If it is her thyroid, then it is treatable, but if it is her kidneys or something else, there isn't much I can do (or afford to do).

She and her sister, Spice, are 15.5 years old and they are the reason I am still alive so far because I promised I would never abandon them.

Cats are good medicine.

anna said...


I think those pictures of you and the cat are lovely.

Sounds like a really bad spell though. I'll keep my fingers crossed and pray that your food and nutrition stays put for a normal time and then comes out nice and easy :)

Basic functions like that seems to never be noticed until there is problem, then IT REALLY SUCKS


yanub said...

It was a stroke of genius for you to get your old gloves so that Hooch would notice you. That is another bit of evidence of your empathy.

What a horrible week you've had. I wish there was something to be done to cool you, to get your bowels to absorb, to provide rhythm to your heart. To buy you time. I am happy each time I see you've posted or emailed. I know you will die, but I don't want you to die. I will miss you. May you hang around longer. I have something to mail you, after all, so you need to be alive next Friday to get it.

Neil said...

It's great that you figured out why Hooch didn't want to notice you. I'm very happy that you got your cat visit.

I'm still here, dear. And Im sorry that I couldn't comment about Eiki Eiki, and your search for a help line. But you were grumping that they only listen; and all I can do for you is listen and read. I feel very bad that I can't do more for you.

But I'll be here until you don't want me here, or until you stop being here. Then I'll be here for Linda if she needs me to be, or for Cheryl. I've grown to love all three of you, you see.

I'm still sending as much positive energy as I can, Beth. I'm sorry I can't do more than that at the moment.

Love and zen hugs,

FridaWrites said...

I'm glad that you got to hold the cat some and figured out why she was reacting the way she did--that's good info for other people with service animal groups to know too, that they need that sense of smell. I don't think I would have figured that out.

I'm sorry you're not getting adequate nutrition and are having more systemic shutdowns. Wishing you a respite from all of this pain and the fear, for more time with Linda and Cheryl and your readers. And more Hooch days, now that you've found the gloves will help.

Kathz said...

I think Hooch looks like a curious an interesting cat - I'm glad you had the idea about the gloves. I like the way cats are independent and won't do what's expected of them. My cat Joe often sleeps on my bed but every so often he wants to sleep somewhere else, as if to establish his independence - and quite right too even if I miss him.

I'm ever so sorry you're having such a bad time and send transatlantic hugs and love.

Kate J said...

Lovely to hear you had a cat visit... but not so good to hear about how ill you are. Cats can help - I used to be involved with some people who took dogs into hospitals, and who got a great response from the patients. I do hope you can get some relief, dear Beth.
You won't hear from me for a couple of weeks - I don't know if I'll be able to get to online somewhere, as I'm visiting friends in France and Belgium for a while, and we'll be travelling. I promise a postcard or two, though!
Love & peace

Joan K said...

I'm glad you had some kitty time. I wish you could have a litter of cute kittens to watch and play with.

It's too bad I'm so far away and can't bring my cat to visit. She's a Norwegian Forest cat, very large and furry, like a Maine Coon cat.

Wishing you a peaceful rest and less eventful times...


Joan and Donna

Lisa Moon said...

Hi, Beth,

I was so enjoying reading about your visit with Hooch. Yes, as everyone else has noted, very clever to think of your gloves to help kitty 'learn' you!

I would love to bring my new fur baby, Princess Sachi-Ko Sakura Anzu Miu (in Western name order and roughly translated at times: Girl Child of Bliss, Sakura you know!, Apricot, Feather... she is solid-looking grey coated, but up close, you can see tinges of apricot on the ends of some of her fur and indeed, she's a princess because she insists on sitting on her People Mom's chest, sleeping on me whenever possible (I wake to her on my chest, purring loudly, doing the pussyfoot, kneading thing) *loves* being carried around the house and just looks so damned sweet yet regal that I can't bear to move her when she's on me or in the way! She even lets me hold her like a little baby and rub her belly, which has longer fur and is so plush... she's just pure, sweet, joy and love.

Ah, yes; cats are indeed therapeutic. I've benefitted so much from being allowed to fall madly in love with her...

And so, as Sharon MV said well, I too wish you a bed full of kittens. I wish you Princess Sachi-ko to visit you in your dreams, sleeping gently on your chest, keeping you warm and making sure you're happy and safe. Don't worry, she's also a great watch kitty and wakes instantly at the slightest 'off' noise!

I also hear, recognise and honour your feelings of uncertainty and fear in this time. I can't pretend to understand and I thank you for sharing this time so that I might learn from it and benefit from your insight, intelligence and determination.

The one thing you've always maintained is your hope; please keep that hope, whatever it might look like.

I send much friendship and love to you, Linda and Cheryl - such amazing women, all.

Brightest blessings to you, Beth - shining star that you are.

Lisa xox

Raccoon said...

I think the cat might have a vision problem? Because that has to be one of the strangest things I've heard about a cat -- and I've heard some strange things through the years...

Now, it does seem that you're not progressing as you'd like. As we'd like. We would, of course, preferred that you increase your function.

I'm glad that you were finally able to spend time with a cat. They really are splendid creatures, aren't they?

And Linda? Just don't arrange the furniture so that Beth can't move around.

Defying gravity said...

Don't think there's much I can say. But wanted to let you know that I'm still reading.

Wishing you and Linda a more stable weekend.

rachelcreative said...

I appecriate your candour about what you are going through. I expect it isn't easy to share some of the details.

I feel so angry that you do not have access to medical care that can make you more comfortable and improve the quality of the life you have left. But that anger isn't going to get me or you anywhere.

I hope you can sleep and have beautiful dreams. That the bowel and kidney symptoms are just a blip. That you and Linda and Cheryl can be together. That you can eat and rest and breath and feel alive. That Hooch can come visit you again. That you get to read your manga, watch you DVD, send your gifts, write your postcards and share with your online friends. That you get the peace and joy you so deserve to have. That you get to fly.

tornwordo said...

I'm glad you got the cat visit. Next time puppies! They do what they want too but they lick your face as well. I'm hoping this bad spell has paved the way for a good one. Hugs to you.

JaneB said...

Those are lovely pictures, but Beth, you do know that if you didn't put in the lovely pictures we would still love you, still know you cared? Same with the postcards. We'd rather have YOU around as long as possible.

Today the sun is shining but there is a sweet green breeze blowing, and my middle-aged cat is lying on her back on a paving stone 'cooking her breakfast' by sunning her stomach - she lies that way for ages, a real example of a cat doing just what it damn well wants to rather than what all the books say it 'should'.

Wishing you the smell of sun-heated cat fur (it's hot and clean and a little wild, with a talcum powder-y tang), and kitten snuggles in your dreams, and some stabilisation of everything else.

Denise said...

I'm glad you enjoyed the kitty visit, even if there were some technical difficulties. In light of your experience with the cat not finding a scent on you, I have some thinking to do on the function of skin.
Love and Peace,
-- dc

Olivia said...

Oh dear. I hope your body has started taking in some more nutrients. Very glad that you figured out the problem with Hooch in time. Cats can be spooky like that but there is a logical reason! I wish you could sleep peacefully with several warm kitties. My dogs keep me warm at night, it's nice in winter (less so in summer!).

Hope you're getting the rest and nutrition now and can feel a bit better soon.

Devi said...

As others said above, it matters that you're there and you care, postcards or no postcards.

I can't find the right words to say, but I do wish you solace and easy sleep, as in a bed full of kittens.

Elizabeth McClung said...

Hi, um, good news/bad news

Good news: I am eating solid food and SO FAR, it is staying in me.

Bad news: I spent part of the day, one of the 'better parts' neuro-blind (where the eyes transmit but the brain makes a hash of things or you get nothing) - which is, um, interesting. Also tiring, or maybe those came together. Always waking to 'breathe!" - and thinking, "I am, aren't I? Oh no....wait, let me try that again."

Sharon: Oh I would like kittens, right now I have Eiki Eiki which will have to do.

Jane: ho ho ho, well, I'm not done with you yet! I mean, um, thanks for the well wishes and to hugs for Linda. I'm really tired but I'm still here, NDY! But had a very bad seizure, did bad things to ribs and neck.

Baba Yaga: Me, too, I got used to the one hour brink or the two hour brink or the being exhausted, but not the 3 day brink, the 'if this doesn't improve, even a little, we HAVE to go to hospital and hope they don't kill me." brink.

I like cats because they have minds, and I can bond with minds.

Wendryn: thanks, I tried to get the right pictures - I recommend making the torii one full screen.

Yeah, Joy would be pretty good about now. I think I have rest and then the pain and then wearing down and rest. It is a bit like a marathon, I simply refuse to stop, but I am getting the feeling I am entered in an ultramarathon - how many times can I think, "I can't do it, I just can't do it." in one week?

Stephanie: Thanks, it finally stopped things and turned them back into what for me, is normal. Without florastor, I don't know if I would have any energy at all - I know some things I don't absorb internally, however, rubbing peanut butter on my stomach has not had a positive effect either (that IS a joke).

Yes, slow down, I have a whole new Season of Special Victims Unit to watch! I need to stay alive - I promised Linda I would watch Bones with her - they better put it out soon!

Poor Hooch, I forgot that when I lost my last two places to sweat, I would have no scent at all - yes, I Am sort of the perfect assassin, if I didn't have to carry my big old oxygen machine and a wheelchair with me!

Lene: I am glad to hear you say that since while I sent one to you which should arrive soon (Already?) this week is a bust for post cards.

We both know wheeling gloves develop um, a presence! Sorry, I can't make any promises about staying here either, but I am working on it.

SharonMV said...

Dear Beth,
Yay! NDY! So glad that you're doing a bit better. I know it's hard for you & takes so much work & pure guts to keep hanging in there.

Here is something good for you to think about - I worked in my garden yesterday. More than watering my sunflowers (first & foremost task). I planted some more seeds - morning glory, more sunflowers (don't know if any will grow cause the seeds are so old), larkspur & catmint. I had sealed seed packets dated 2005 - so you know it's been a while since I had a garden.

I was not having a good day (bad cold & lupus flare, etc.) yet I was able to be a gardener again. A few more herbs and a lavender plant or two and I'll have a full-fledged garden again.

Hope you keep getting better.


A Bear in the Woods said...

I wish for you to sleep gently and pain-free tonight, with Linda by your side.

I think of you all the time.

marie said...

Beth, Being a cat person -- I'll tell you cats have strange ways... my own can be such a pickle sometimes. So, take heart things that can be a pickle or riddle give us an opportunty to focus on the delima. The best of all possible bests to you... marie

Full Tilt said...

Dear Beth,

I am beyond words at what you experience daily and as others have said you are an amazing person. I wish you and Linda and Cheryl peace.

Don't worry about the postcards, please just take care of yourself. I read here all the time and send you positive energy. I hope you'll enjoy more visits with Hooch. Cats are wonderful creatures. I would be lost without my trio of feline companions.