Thursday, December 31, 2009

The 101 of pain/strokes, hug a panda, the allure of boobies and Ringo!

Good job!

I thought that if your experience is like my experience then going back to work after a break kind of sucks and no one is very appreciative of what you do. Indeed in most jobs the person with dedication seems to get the least appreciation. But you roll up your sleeves anyway. So though you may not hear it at work because I am not your co-worker or boss, you can hear it from me: Good job (and if your job is staying alive and/or sane and you are reading this, good job on staying alive, but about staying sane….mmmmm, try harder! Wait, that was a note to myself, I really do need to try harder).

Over the break we made up some phrases. One is ‘follow the body’. That means with a rapidly changing condition it is best to listen to what the body is trying to say and work around the body. It beats recovering from having decided days in advance what I will do and then trying to force my body to do it. Another one I am pretty sure I stole is ‘The heart wants what the heart wants’ (that sounds like I stole it, right?). That means, sometimes at the end of the day, unless it is illegal, try to be at peace with your desires, whether sexual or otherwise (oh yeah, that's another post, DESIRE!).

On that note I thought I should put up some yarn porn for the knitters. Yarn is actually so attractive that many species (think kittens and yarn) adore it. In fact, right now, I want to thank whoever got/bought/made me the knitted finger-less hand and wrist warmers. They are striped orange and black with skulls and I am wearing them now like most days to help with the Raynaud’s (all three times I worked on this post!).

See, knitted things are very comfy against the cold, and it is always cold somewhere, that is what knitters tell themselves while stocking up on skeins. Besides, it can literally be done anywhere. The heart wants what it wants, go with it. For example here we have a woman knitting while hanging out in a forge, not the most common knitting venue. Maybe she is having beefcake for breakfast (nudge, nudge, wink) while knitting. She even has a bobbin at her elbow while knitting one of the Men of Steel a scarf, because that is what every blacksmith needs (particularly those with big mustaches!), ya, you betcha, lots of scarves at the forge (???).

As for me, I had the promise and desire to play with my Lincoln logs. They mini-logs with squared off ends much like those logs which Abraham Lincoln made a cabin. I played with them as a child in Surrey, BC. Toys were: paper, my pink rabbit, Light-Bright and Lincoln Logs for toys. Anyway, I actually had bought these Lincoln logs as a gift for someone else. But I thought they were a small set, a bit of nostalgia for them. Except what comes is this giant several feet maple cabinet with brass settings.It turns out I had got some super-duper executive Lincoln Log set which cost more to post than I paid for them, so I kept them. I had great plans with Cheryl, we were going to create the ranch of Bonanza. Actually that was her plan, and I have NO IDEA how she knows the exact outlay of the Ponderosa Ranch (too much summer TV I think!). I didn’t mention that my plan was to build the ranch and then…..BURN IT!!! Woo hoo! I mean, this way I could save Lorne Greene, the great singer of RINGO.

Besides I could also save Micheal Landon, the ‘youngun’ at the Ponderosa Ranch. Okay, now that I look at that in the cold eve of 2:00 a.m. that sounds pretty reasonable but I am sure in the morning there will be some reason I can’t follow my heart and set part of my apartment on fire. Oh wait, it is illegal. See, good thing I had that clause in there, huh?

Instead of more of that brain medication, I think what I really need is some quality time with a hug.

It is cruel and ironic that the one thing I almost never have is human contact, because most contact to me is painful. And I mean physically painful due to the heat of the person or just some sort of reaction where it physically hurts to be touched. A life without touch, without a hug, is kind of sad. I think this is one of the reasons I want a cat badly, because any touch, that physical reminder of love is something I think we all want. And once you have passed that point: the point of accepting in the bones that from now on it is just you, the pain, and the will of how long you can take it, THEN you really want touch. Not that sense of being among people but apart from them. That is loneliness, but also an aspect of so many things, whether it is dying, isolation, fear or pain. Dying is sort of a long to explain place so I’ll talk about that later, but pain is common enough to be universal. Whether it is fever, migraine, broken bone, ripped muscles, pain is pain. Pain makes it hard to think, as there are so many messages coming in.

For me it is as if there is haze plus a cloud of bees stinging me, so feeling that and trying to collect and focus my thoughts to talk is hard, and when someone wants me to repeat things, even harder not to snap, to focus instead.

I am trapped in a burning house of pain and I can't escape much less get out of my point of view to consider, “I think they are just asking for clarification” or “They look like they have had a bad day, I better not make it worse.” Or even sometimes to know where I am, or whether I am on the floor or not. Pain is the baby which will not stop screaming and whether you want to or not it demands your attention. So even trying to speak calmly comes out….intense. And it makes the funny go away, it makes that buffer of social graces go away. Because it just IS.

Yesterday my heart was severely out of order, waking me with erratic heart beats. I had to take 50% more heart medication during the day, which later depressed my heart and respiration until I passed out and stopped breathing (BAD!). Linda got that started only to have the heart go wonky again. It was a stupid cycle which ended up with me stuck in my wheelchair until Linda could come get me.

My day tends to go like this: I have a fuel meter much like a car, only mine is the one which is broken and tells you that you have half a tank and then makes you run out of gas/petrol downwind from a pig farm. So as every day goes on I have less and less to work with and more and more problems: blood pressure, heart rate, respiration – those are the big three: stroke, infarction, suffocation (the bad outcomes). So last night I worked late and there was a delay in the amount of heart medication. That caused erratics at about 25%-33% of heart beats. At 75 beats a minute that is at least 20 or more erratic beats per minute.

That feels like having someone reach into your chest and sqeeze your heart and hold it, for one second, for two seconds, then release it for a beat or two and grab it again (and that is only 10 heart beats). That feeling tends to focus the attention: as the 'hand into the chest squeezing the heart' is bad. Then my heart would have a run of 15-20 erratics so fast that no blood is pumped by the heart, that is how fast it goes, and the chambers are out of synch. That is eye popping stuff. So right now I don’t know whether I am up or down. If I am lucky I can tilt and recline my chair so my airway is clear. Often not. I pass in and out of consciousness. I can’t breath, which means I can’t scream, can’t speak. Problem is that my vascular system gets wonky too and opens or closes a bit at random. It if opens too much, I pass out as there isn’t enough blood going to my brain. But if it closes, then there is so much pressure after a series of erratics, that big huge push of blood, the life preserving measure the heart makes shoots blood up a tiny pipe under enormous pressure. By this time, my left hand and sometimes whole arm is the color of a black grape and shrivelled (as no oxgyen, and sometimes no blood), sometimes just dark purple, and meanwhile that high pressure hose of blood blasts into my brain, into every little capillary. And if just one has a small burst, I get a mini stroke.

A mini stroke can affect memory, or speech, and half or more of my body including making my face droop. That is called a TIA, which means a stroke that where operations (like having a smile that goes up equally) are back working in a few hours to a day. There are actually lots of TIA’s that last longer than a day, but they don’t have a name for those yet (so they call them TIA’s because that sounds better than stroke, doesn’t it?)

“I had a stroke yesterday.” Woah, that is Serious!

BUT “I had a TIA yesterday.”

Response: “Did you get the cinnamon with that, I hear it is pretty good?”

So I was trying, again, after having lost 45 minutes to depressed respiration, to do a little bit of the blog post I wanted to do. To chop it into bits. To be witty and fun. I mean, I am in pain and can’t be touched and so realize I am a bit miserable. Who wants to be known as 'miserable girl'? So I desperately want to be fun, to be funny. But I am having problems and while working I have some erratics and lose time and then I decide, that’s it, I’m finishing this as soon as I get up tomorrow (another story), so I shut everything down with my mouse hand, closing down the computer, the air conditioner. This is when I notice that my left side of my body hasn’t moved. Ah crap! Plus I am only using one eye. I have to transfer out of this chair to get to the bathroom and bed. I try to do that with my good arm but while I can move it a couple feet, I can’t lift the 8-10 lbs of weight to lift up the right side of the wheelchair so I can transfer to my tiny manual wheelchair (waiting for power chair people to change the weight on this). I transfer to go 30 feet to the bathroom. Previously, I have thrown myself, or fallen out the Power chair and tried to drag myself with one arm, but that doesn’t work well. Sigh.

Okay, I need to recline this, particularly if this is going to be a while and I might pee myself, also I need to move my head as near to the baby monitor as possible. That is just a few buttons held down. I start calling: “Linda? Hello, Linda. Linda!” I could try to drive the power chair but since I have bits I can’t feel (feet, an arm, etc), and about one hand I can feel but I can’t always see or stay conscious, or get distracted by pain then that is NOT a good idea (we call that the 'little chunk out of the wall lesson'). So I lie there, calling. I am not oxidizing well and my voice is weak and husky, “Linda, I’m stuck, Linda.” I could push my emergency button for an ambulance, but why? I just need to get to bed. Then the heart hit again and I can hear myself repeating something, “Linda, help, Linda, please, Linda, oh, god” but that is way UP there, where consciousness is slipping away under the blanket of pain.

How long? I don't know but after a time, Linda comes. Sometimes, it is a LONG time, but she comes. And helps me to bed. That is what happens. Linda gives me quiet time in the late evening but I am guessing that is coming to an end, as this risk and incidents increase.

Having something to hold when I am waiting is good. It helps. I think for all forms of pain and lonliness it probably helps. What a better world it would be if we hugged more things (you may love the cactus, but I don’t recommend hugging the cactus). Hug a panda, hug several baby pandas.
The heart wants what the heart wants. There is a solitude which is ‘me’ time, and there is a solitude of longing. Sometimes not even knowing what we are missing until it is filled. Sometimes something that simply cannot be filled but that yearning can be distracted. How about a kitten, don’t you want to hug a kitten, or pet one? I think the kitten in her hair might be a bit much and difficult for combing out later. Still contender for cutest picture EVER.

Now, this is really important for the Seme’s out there who seem, at least in the 1,000 Yaoi stories to simply ignore or grab what they want. Picking up a kitten, a cat to take home and pet is okay. Picking up and taking home a cute guy IN a cat cosplay outfit is NOT okay, well not unless the uke wants that too (oh, and sometimes they really DO!). However attracting someone who is candy to the eye and warmth in the heart with pets (like puppies) is an age old technique.
Okay, a serious warning here for both genders. We all like to look at the boobies, we like to feel the boobie. But whether you are female or male, if that isn't YOUR boobie, just because it is VERY attractive, just because you WANT it, doesn’t mean you can just go get it (and try to remember there is a FACE attached to those boobies!). That is where the ‘no illegal’ comes in. Consensual abduction and groping only please.

On that note, Cheryl, Linda and I went out a few days ago at dusk to see if we could get any squirrel loving. I had one pregnant mother who went straight for the lap and the biggest peanuts (that sounds dirty, but it isn’t). While Cheryl in her cool skull headband attracted about 5 squirrels, all of whom were a bit twitchy. This one is the ‘brave’ one, who seems to be made of rubber (it must be young to be that flexible, you know, like how you used to use your feet as a pillow while reading or read while standing on your head – wait, I actually did that!). We didn’t see many squirrels before the sun went down but soon I will arrive early and they will flood around me. Which brings up the, ‘if you are scared, don’t go into the petting area’ rule. Like not lying to boyfriend/girlfriend you love cats when they scare you, or coming with me if you are terrified of squirrels running up your leg. Because otherwise you will be the person in the back of this picture (I am the one in serenity in the front of the picture).

I think that is it right, a good job, and an explanation of getting stuck at night and then the important stuff, like hug a kitten, or better yet, hug a CAT GIRL, yes, and get all the rabbits and cats to help you do cooking. Now that is a fantasy, but still, if I could get Linda to put on the cat ears I could hug some boobies AND a cat girl at the same time. I only wish there were cats who made food, though they sure know how to turn up when it is around, don’t they?

Well, I did it. I hope you hug in. Next I will try to write the the posts on ‘Normal’, 'Desire part I and II' and ‘The Plan’ – I know part of The Plan involves me cleaning this place up. But that isn’t really fair since I am a person who would have four things out and STILL be yelled out for making a mess. True, you didn’t want to see inside of my desk at school (or locker, yikes!), and I was the person who was doing my homework while the teacher was taking attendance. I can’t help it that pens mysteriously disappear around me, along with keys, important papers that must not be lost, things put ‘away somewhere where I won’t lose it’, combs, prescriptions, DVD’s, books, the top that would go perfectly with this outfit (that is ALWAYS lost, regardless of outfit). It is just my curse.

Have fun, hug, don’t be illegal. Geez, I sound like a parent.


Baba Yaga said...

Meh, needing hugs and being unable to tolerate - that I grasp. And regret touch pains you (more): cruel indeed.

Otherwise, something I realised a long time ago is that bodies are like cats: one may think one owns one's body, or cat, but *it knows better*. Following the body is good, if disruptive to plans.

rachelcreative said...

"Have fun, hug and don't be illegal" sounds a good mantra to have.

My mum was diagnosed a few years ago with a leaky heart valve and she had a lot of palpatations. Medication controls them pretty well although she does get them sometimes still. Reading your description about how your heart is going so erratic gave me a clue as to what she might be feeling when she gets the attacks.

So thank you. For helping me understand more about what you're going through and for giving me an insight into what many other people go through too.

I got a beautiful postcard from you today. A sight for sore eyes. Thank you.

Diane J Standiford said...

For me the pain was knowing MY touch, no matter how light, caused pain to the one I loved. When once we were all over each other, suddenly I couldn't even pat her head without her screaming in agony. In my dreams I hold her, tight, like she once loved so much. In my dreams. I too manage to make it to toilet, but when was that time it was so easy? I can no longer remember. I would love a dog to pet, but I couldn't care for it. My home becomes smaller and smaller. My lift chair is my mansion. My caregiver, my partner, is usually sicker than I, during the nights I hear her cry and moan, all alone in her room, I want to close my eyes and fall asleep until she and I meet again in another time where there are hugs again, laughter again, no rollercoasters of joy to depression...she will be well and that will make me well. Just close my eyes until then. For now, to you, (( )) purrrrrr

cheryl g said...

Thank you for the good job. It is nice to hear and it isn’t said very often.

“Follow the body” is a good plan. It will help you and it is a good reminder for me that your body and your condition decide what plans we make and which ones we follow through on.

Yarn porn isn’t really my thing but I like the pictures you illustrate it with. Knitted things are very comfy against the cold and I have always loved the sweaters, scarves and mittens my Mom knits for me.

We will play with the Lincoln logs but we are going to “follow the body” in deciding when. I also think setting them on fire would be a bad choice since it is illegal. I know the outlay of the Ponderosa because we watched Bonanza a lot. My sister had a crush on Little Joe and I wanted to be Nick Cartwright.

One of the aspects of your disease I hate most is how it has robbed you of being touched. So many times I want to hug you or hold your hand but my touch causes you so much pain. Thank you for explaining about the cloud of bees stinging you along with the haze. That helps me understand much better. I will try to remember that the pain colors your intonation and intensity when you talk as well as altering how you perceive the world around you.

I do want to hug a kitten or pet one. I love the picture of the girl with the kitten on her head. Kittens and puppies make the whole world seem better. They are good for loving and for hugging. They help chase away the lonelys. Groping boobies can also chase away the lonelys but it can also get you smacked or arrested if you don’t have permission first.

Have fun, don’t be illegal – that’s good advice.

FridaWrites said...

I hope you have a much better New Year's Eve and New Year than Christmas. I miss you and I've been reading--I spent Christmas here by myself from 4:00 on so my husband and the kids could see his family. I would have had them here too if I hadn't dealt with such criticism this past year from them. I wanted to enjoy Christmas here since it may very well be our last one in this house and I've never been "allowed" to have it here before because of other family members being Queen Beeish. So we had it here for the kids and my family this year despite all the work--I am just now beginning to recover from the pain.

Follow the body and the heart wants what the heart wants: I am feeling those this year!

I'd like to look at yarn porn too sometime. Even though I don't know how to knit more than a row or two, it's just so soft and pretty.

I am sorry about all the TIAs and other autonomic problems--I'd rather you never have to know about them or feel alone/by yourself until help comes. I sometimes can't get out of bed or need help in the bathroom and no one's around--obviously someone would come right away if they knew, but the wait is difficult!

FridaWrites said...

PS, I love the pictures.

SharonMV said...

I am so grateful that I can still tolerate hugs. Wish I had more people around to hug & be hugged by. I do miss human touch, contact with people. Spending so much time alone is hard. And I am so very happy that we have Chloe, the cat. She loves to be petted, especially by me. And she is so endearing & comical at times. A bringer of smiles.

Yes, yes - follow the body. This is what I've been trying to tell you. I know it's sometimes hard, you want to fight the body, use your will in that battle, have it your way. But the body is very stubborn & strong. Even if you win a battle, it punishes you. It's not giving in to follow the body, often it is the best course of action.

The heart erratics must be so painful & scary to go through. i used to get tachycardia & felt my heart pounding & that was disturbing enough. I hope your heart calms down (but not too much).

I'm working hard at my jobs :staying alive, staying sane, trying to get better. A big job is loving Dennis, and taking care of him, but I need to stay alive & somewhat sane in order to do that job.

Don't stay up partying tonight. Maybe even reduce the evening quiet time. Work less, rest more.



Marla said...

I love love love the yarn pictures. Thanks so much for all the post cards. We had an unplugged holiday. Everything went very well and M is staying healthy. I am glad to see you are doing well and still taking care of the squirrels! Have a Great New Year!

Aviatrix said...

Never worry that you can't write a funny, engaging blog. You've got it going on, even when your life is pain and huglessness. You write so tangibly that we think we could reach out hug you, just reading the blog entries, so it's a bit of a jolt to be reminded that we shouldn't hug you, lest we hurt you, and then it's sad to contemplate that.

Now if I'm ever present when someone is having a TIA I'll be thinking, "Would you like some cinnamon with that?" Thanks a lot. :-)

Raccoon said...

Yes, "follow the body."

When the body says "rest," that means it's time to rest.

Catgirls = Good!

It's been long enough, for me, that I don't need hugs and contact that much. Want them? Desire them? Oh, yeah! Of course, this works out well with medical staff -- they don't like touching people unless they have gloves on!

This week I got not one, not two, but three cards! The three of you have been busy, haven't you?

Lene Andersen said...

I hurt too much to hug for over two years. Sometimes, still do. Not being touched sucks.

Follow the body, be at peace with your desires and have fun, hug and don't be illegal... nice summing up of what life should be about.

Your descriptions of the way erratics make you feel was brilliant. Wish they'd leave you alone, though.

Victor Kellar said...

Hugs are always good. I've been lucky in that I've never had a condition where I couldn't physically tolerate hugs but went through a period of time where I was emontionally unwilling to make that kind of connection; I've gotten over that, but I always feel I've missed something, so I understand, a little bit, how you feel

Yarn porn? Um, well, you know the old joke, give me some steel wool and I'll knit you a car .. ok, knitting car porn, I may be able to go there

Neil said...

This is a hug. It will not hurt you, because it's what your body wants. Or needs. But I'm afraid I don't have any cat ears to wear while hugging you.


wendryn said...

My browser has been crashing a lot for the past few days - sorry I didn't get to commenting yesterday!

"Have fun, hug, don’t be illegal." Good advice, I think.

Lincoln Logs are a lot of fun. :) Burning them down might be a bad idea, not just for the fire in the apartment, but it probably wouldn't be good for your ability to breathe, either. Just a thought...

Kittens are good. I spent some time with Eris on my lap today, just purring, and it was a good relaxing moment. I am really glad you got to see squirrels again, too!

I'm still here, despite my computer being a pain. I'll keep being here, keep reading & communicating.

*hugs* (the kind that don't hurt!)

Denise said...

I hope your New Year was much better than Christmas. Following the body's demands is something I'm learning even as an AB. There is no ignoring when the body says "Sleep dammit!" It can be awfully inconvenient, vexing.

Thank you for the "good job!" I keep telling myself I'm not doing enough. Certainly my grad school advisors aren't satisfied. So it means a lot to hear a good job somewhere, especially from outside school as a reminder that while it's consuming a lot of my life it is not everything. I appreciate the encouragement!

Mail call! I got the New Year postcard today. I should record the "WAAAAAAIIIIIIII!!!!!!!" sound I made and send it to you. Really. :)

Love from afar!

Olivia said...

I love the pictures you used for this post, especially the 'knitting in a forge' one. That is particularly weird, except not, as I know knitters who have a simple project in their bag for 'walking around town', and those who will lend their 'emergency knitting' to the poor soul who turns up at lunch time knitting group without their knitting.

I wish I could give you a hug. In fact I will, and I hope that virtual hugs are worthwhile. At least it won't cause physical pain.

Elizabeth McClung said...

Hey, I'm still alive...well parts. haha.

Baba Yaga: Cats are mysterious, even more so when in ones hair.

Rachel: Yeah that little grunt and the 'ughhhhh' sound, is definately an indication that the heart is deciding to act up - the only trouble with the meds (or mine anyway) is they take about 10-15 minutes to kick in. That can be a lot of erratics or in your mum's case leaky valves. I had P.A.T. which gave heart pain before while fencing, and decided to NOT have pain med in case it slowed me down - if I had taken it, I would have been able to walk and fence for another month or two, but delayed diagnosis another six months - sort of darned if you do or don't.

I am glad you liked the postcard. I am glad the description helped. I hope you mum's medication is WAY faster than mine, not fun.

Diane: Ah, thanks. I can't comment on your situation, as life has led us to a complexity, both of us which is hard to explain. Also, I try not to talk about the after, just the now. How to stay motivated to keep Linda not lonely.

Cheryl: Alas, the readers used to be blogged with knitters and now they have moved on like a tribal thing? I am glad to support your work, as you don't sound like you get enough (support). I know you wish I was more able to be less directed by pain, and vice versa. Sucks.

Frida: Yeah, the waiting really sucks, the only advantage to a fever is being off my head or not aware. The knowledge of being truly dependant while aware of life and habits of independance are hard to shake, and for others to understand, I have found.

Thank you for thanking me for the pictures, I try very hard to have really nice pictures to look at, lots of different artists.

SharonMV: I find the body is like light, both a wave and a beam, it is direct and rolling, in the reactions, I just need to both synch with it but also understand and move the affects. Of course, sometimes difficult when I don't feel things and thus am exhausted for injuries I don't know yet have happened.

It is will that sustains me, will that continues what I need to stay here, to do what I do, to be there for individuals. I continue to love, I continue to act, for Linda and others. I am team terminal, and I am definately going into overtime!

Marla: thanks so much for the comments, I am glad you liked the yarn pics. I try to please all. I am very glad the postcards were recieved well. Thanks.

Avaitrix: Thank you so much, I was thinking, "But I made so many jokes and everyone is so serious" - I am glad that at least the parts that were meant to be fun and funny were, I want the blog to be fun, and yet about serious stuff too - odd mix.

Raccoon: We are always working away, look to the post, Linda was away but I still managed to make sure that if post goes quickly, you should see things in a few days!

Rest, 'vat is 'dis 'rest' you talk about? (that was my transalvania accent). I want to rest, I want to do so much more than I do - that is a war I haven't quite decided which side I am supposed to take. Exercise keeps my circulation going, and that is good.

Catgirls good, touch is good, desired, wanted.

Lene: Thanks.

Victor: I didn't know that joke so a new one for me, for next time I need it. I will write it down.

I understand about the unwillingness, I still scream, sometimes in the night when I have to be waked for pills. I still, if not fully away, try to escape, even with Linda. But the need to be connected is still there in the conscious mind, but subconsciously. Okay, that sounded way too odd.

SharonMV said...

Dear Beth,
So good to hear from you. I like your analogy of the body & light. Light can bend too. It is all very complicated, isn't it? Yes, definitely the will that sustains you & keeps you going.And yours is very strong.

I have a new shipment of stickers ready - I'll try to get them in the mail this week.


Dan said...

Hey Beth, and everyone else, I just happend to stumble across this blog. First of all I wish you well Beth.

And I wish I could help mend your broken wings, for you seem like a very intelligent and beautiful person. It may seem that the most beautiful ones are the ones who have known sufferings :| It seems to me almost that the suffering some of us endure is like a blazing fire that burns away lot of bad stuff and leaves something beautiful and sparkling behind.

I love anime btw and I really wanted to know where\what anime that girl sitting with the blacksmith was, if you or anyone could tell me ??

I know what I'm about to say is not the most popular thing to do, but out of care I will, cause I think time is short for all of us regardless, seek therefore the great spirit, who created heaven and earth. It is he who is known as God. Knowing God is wisdom, and in him there is life forever more, a life worthy and far superior than anything that exists here in this world. i.e losing hope in this world does not mean being with out any hope at all ! If you hope in something more than "this" present reality that we can see and touch, we'll be sharing in a hope together.