Sunday, June 28, 2009

farmers market, pain, weekend, pain, seizures, more pain, falling down, screaming.

On Thursday evening I went to a BIG farmers market of over 100 stalls. And in retrospect, that probably wasn’t the best idea. I say that because I was going to be doing a lot of talking on Friday and had a hair appointment on Saturday plus work and postcards all the way till Sunday, a medical appointment early on Monday and a Tuesday flight to see Linda’s relatives.

But I did go to the market and there was some really nice stuff there. Here I am at the beginning, in front of a woman’s stall who sells regular hand-made soap AND goats-milk soap AND Emu milk soap – that’s right, Emu soap, in many different scents and flavors. So if you need some, let me know and I will pick it up.

I did go a searching among the many jam and jelly people for diabetic jams. And I found a woman who was going to go into in, and while we were talking a guy came up and said, “Did you say Diabetic Jams?” and we talked and I told him where to get his at the James Bay Market on Saturday. So there is a buzz. I found a nice places that has these SMALL jars of diabetic jam but then were very aggressive going, “No, you can’t take a picture of it, it is under copyright!”

I said, “I am taking a picture so a friend can tell me what jams he might want from you.”

“No it is trademarked and everything!” They said and were very firm about that their jam jars not being photographed. I am seriously confused as M&M’s are trademarked but you are allowed to take pictures of them. I mean, it is an OUTDOOR market place of tables, I am standing in a public space and I can’t take a picture? Linda and I have found this before, with artists or potters who go, “No, you can’t take a picture, that is my original art.” And found that there are the 90% of the people who love the CRAFT they are doing, and when I put pictures up, like the woman with the soap, then people end up with soap, bought from her, or go there to get soap from her. Or like with Jason Hunt, I commission a piece from him and others can, as he has the cedar and will send me pictures as he carves it, see the process and contact him if THEY want a commission too. Then there are the 10% which are about the BUSINESS and are sure that they will somehow LOSE something if a single person ever sees their work without PAYING. Which is the fast road to obscurity. A little further on I FOUND the assistant to the Jam maker and here is what they currently have in Diabetic Jam (which they were happy for me to take a picture of). The jars are $5 each. They are also wanting to do more flavors and if someone wants to give a list of the flavors they would like, then they will try to do as many of those as possible.

It was actually sort of weird because Victoria IS a small town and I do review these markets that some of the people and stall owners were talking as I went by, “That’s her, yeah, in the wheelchair, she’s the one that does the markets.” Or a person going, “Yeah, I’m sure that’s her, there was a picture of her next to the soap.” It makes me feel rather weird like I am a reviewer or something. I just like finding interesting things, like this older gentleman who was selling broaches, Victorian and Edwardian broaches much like this beautiful piece shown here. I can’t do a full piece on the market yet as I am too wiped out.

But I did want to show this place that was packed called Mitchell’s Soups which sold salads, soups and desserts, all for $5 Canadian (about three pounds) which you just put in and soak (for soup, about 12 kinds) and with the salads, add lettuce or a single staple. I mention it because like many other places I asked about diabetic and gluten free and this place has three gluten free products, two salads and one dessert. We got the mexican soup (very mild we are told.....hoping!)

Then Friday I had some problems (GI) and crashed, crashed really, really bad, and then had some seizures, and some more seizures and some more. When coming home on Thursday I told Linda, “I have hit bottom, that is IT!” But Linda didn’t really get what that meant, like maybe I would need to rest before the hair appointment. No, that meant that I did not know if I could make the plane on Tuesday. But after not getting to bed, and hallucinating with a fever and having stopped breathing and waking to find myself suffocating (because I was too weak to expand my lungs), and had to be hauled bodily upright, and passed out about six times. Then she got it. And so did I. And I got to bed past 7 a.m. and thought I was in a cave.

I just wasn’t able to take care of myself, I had to be watched at all times or I was in risk of crashing which meant dying. So I was on 24 hour watch with Linda and Cheryl. And we needed that close watch at times: for seizures, for falls, for stopped breathing. One time, I remember clearly, my right leg from the knee down contracted so hard that the muscles ripped, a seizure, but while I was asleep. I woke with a scream because of pain that was high, high, high even after that pain article. And indeed it was enough to alert Linda and get her to the source and then I passed out (due to the pain.) When I came to, screaming again, Linda had managed to calm many of the muscles and tendons. However, that leg has caused problems and now transfers are dubious. And to answer a question, yes I am using INDY.

What we wanted was a nice quiet weekend, some hanging out time, some doing some postcards or reading, whatever time. That was what we wanted, just resting up. Taking it easy before having to do things on a summer day. The problem was I just kept stopping breathing, or falling over. Or the muscles from the seizures six, or eight hours ago would super-heat in healing and I had no way to get rid of it, and I would pass out. And then there would be another seizure.

Of course, I was determined to try and keep things on a type of schedule, to try and keep things normal, even if from my bed or INDY and so Cheryl (blue hair) and Linda (green hair – actually after the hair salon she has RED hair now!), came to me and we talked and stuff and then I would pass out. Am I scared? Well, I am going someplace where it is hotter than here, where I don’t know if there is adequate air conditioning, where everyone knows Linda, where no one knows the limits of my condition. Yes, I am terrified.
But we had the postcards sorted from last week and we did them. I had a seizure which ripped some muscles and did a partial dislocation of my left shoulder (my writing one – so things took longer – five hours instead of two to write the postcards – but they got done). We took the time to do the stickering again, and I enjoyed that. There were some new stickers. And then the stamping. But also we had some new cards from a limited edition set. They were very cool, they were oversized and perfect for stamping in texture and size. And we enjoyed seeing them. I will miss them. This one here is my favorite and it is going to a special person. Someone who did something without ever believing they would receive in turn, and acted simply because they noticed a need. It was a sacred act of kindness so it gets my best gothy, steam punk, old world postcard.
I guess what I want is a real vacation for Linda and I. A time to get to know each other all over again. Because with the hours away and the sleeping I have to do when she returns, I don’t know if Linda knows me as well as she did or can recognize the signs of how and who I am. I would like a time to be loved by Linda and to love back. And then I would like for her family to be part of that.

However, that is NOT how family visits go, usually one, two or four people decide what everyone is going to do and when and the person visiting is sort of like the prize goat which is shown off to people here, there and everywhere.

This weekend, in fact this last 3 hours I have fallen down twice, hurt myself badly once, started to suffocate once, unable to sit upright three times, and having purple hands for two hours. But we are packing, we are getting ready to go. I also think I had a seizure; the seizures are a stupid cycle because I cannot stop. I cannot NOT go to the doctor’s appointment tomorrow, I also cannot NOT take the plane trip, so I cannot simply lie in bed for two days to get the strength to do things. So instead, when I do things, and after a little bit, when I am used to things going well, I feel funny, I see blue sparkles, or I fall over or I can’t use half of my body and then I smell burning rubber and after that I wake up and my back REALLY hurts and Cheryl tells me that I practiced “Human Origami” and that I wasn’t doing the folding right because I can’t actually tuck my head backwards into the middle of my spine.

I may not post for a few days. I recommend reading the pain post before this one because dying and pain have been on my mind, or rather thrust onto me (and into me), of late. And the comments because Rachel is right, why do I need to say I WANT to live? Do any of my readers have to start every comment that way? Yes, I want to live, maybe not with this much pain, but I want to live. And if we as a society can talk about childbirth and all the things that can happen and the little things like cravings which occur; we can make public stand-up comedy routines about sex or relationships so why can’t we talk the same way about chronic pain, about degenerative pain, about not being able to remember a pain free day? And talk about how we cope, what we notice, what makes the pain that little bit extra that reduces us to tears (the future for me, the realization that this really IS ME, and that nothing is ever going to go away – that is what brings the tears, that with fatigue).
I have to go, but I wanted to show you this weekend and there were good parts too – 33 postcards and 4 packages. We are sending to five continents this week, and I think at least 2 postcards to each of those continents except for one. I watched some anime with Cheryl, we talked a little manga. The rest I don’t know, wiped clean by a seizure, only to see bits and pieces, like a surreal film. I hope it was a good weekend, I will post as soon as I am able.


FridaWrites said...

What a difficult time you're having. I am glad that you got to go to the market and I hope that you're able to make your medical appointment. That and traveling Tuesday sound extraordinarily challenging to do and I am worrying about you. This is about all I can write this late, but my thoughts are still with you.

SharonMV said...

Dear Beth,
I wishing for you, hoping that the trip will not be too hard. I know that traveling and visiting with family are two of the hardest things to do when you're so ill & in pain. I had a very difficult day when 3 of my sisters came a couple of weeks back. And they came here! No traveling involved for me. I wanted to see them & visit with them, but I was very sick the day & night before, which made me anxious & made the day harder. We did have a good visit, but I wish I could have had more time with my youngest sister who was down from Oregon. And I paid for it & am still paying for it.

I know you want to go, for yourself & for Linda. I know why you're scared. Maybe you could write down some guidelines for Linda's family members, so at least they could recognize when you're having an emergency. Especially about ways to cool you down.

You only have so much strength, there is only so much that will power can accomplish. You need to look out for yourself with all of your power now. If you can't talk to Linda about your concerns, let her read this blog. Her attention will be distracted with her family around. And as you said, family dynamics are always in play - like the one or two people who decide what everyone's going to do. You & Linda need to be able to say NO. And you & Linda need to communicate - maybe set up some key words or gesture's that will signal if you're in trouble.

I hope you can rest & get better before the trip. I will be thinking about you. If you really can't do it, then don't - that's my best advice. I know it's very hard & disappointing if it comes to that. But having you here is better than a memory.


PS: remember, we are still working on getting you some better pain relief and IVIG.

Abi said...

Good luck with the visit! I'll keep my fingers crossed for you. It sounds very challenging indeed, and I hope that they have enough air conditioning and tolerance, at the least.

That post has some gorgeous pictures in. The pictures of the market are lovely, I love the postcards you are sending, and that girl with the red flowers behind her. Very atmospheric.

CJF said...

huge hugs from this side of the ocean. You're on my mind.

I get chronic UTIs - very very painful ones, though clearly not on the same pain scale as you work on - and I have one right now. It never ceases to amaze me how few options there are for managing pain in one of the most common illnesses women get. Let alone the uncommon, unusual and atypical ones.

I'm sending positive thoughts in your direction.

rachelcreative said...

All the best with the doctors appointment, plane journey and family visit. I'm always anxious myself about visiting despite how lovely everyone is. I think we both said it before - it's being in a different environment with unknown spoon requirements.

I'm keeping my fingers crossed you have an above average few days health wise.

I guess we don't talk about pain, illness and dying because they make people feel sad? But maybe if we talked about it more then that would change.

So sorry you're suffering so much. Wish I knew a way to give you back a comfortable life.

All the best with the trip.

Lene Andersen said...

Aw, honey. What a crap weekend for you. And a crap time. I'm glad you got to go to the Market to have a bit of normal amongst the hard stuff. Wish you could have a week of just nice things instead of all the other things. A vacation from it - how come people with illness/disabilities/ pain never get a vacation from it? Why isn't there a pain kennel where they'll board your pain (like they do with dogs) and you can fly off somewhere? Hey... maybe that's the beginning of our stand-up routine about chronic pain?

I hope you get through the flight and the visit intact and that you enjoy it.

Neil said...

Good luck with the schedule, dear. I hope the doctor is human, and the flight happens uneventfully. And I really hope and pray that you get a good vacation out of the trip.

Beautiful photos again, Beth; and a good one of ELizabeth, Linda!

Love and more zen hugs than will fit in an email,

SharonMV said...

Hope you made it to your medical appointment & that you are feeling better. Hope you can rest & get some strength back for the trip.


Full Tilt said...

Dear Beth and Linda,

I wish you a wonderful and safe trip and send hugs from afar.

yanub said...

I hope you are able to read comments, even if you aren't able to post. May your trip be better than you anticipate, and may the love of Linda's parents embrace you both and offer some of the care and concern you deserve.

I am not too surprised by the artists and artisans who get nervous having their goods photographed. There is a long-standing problem with artists and crafters of representatives from large companies coming through craft markets, making notes and taking photos, and then having knock-offs made cheaply by slave labor abroad. Still, it doesn't do any good to forbid photography. A determined concept thief will just buy a sample and go from there.

You ended up getting out much more than I did this past weekend. Between the heat and the pressure wave, I was pretty well flattened. That you get yourself out enough to have a reputation, even if a mistaken one, is impressive. You are dying with flair, and doing it right out in the open instead of politely behind drawn curtains and closed doors. I like that, that you don't let the possibility of keeling over in front of people reduce your prospects for experiencing life.

wendryn said...

I'm really glad you got to go to the farmer's market! I really hope your trip goes well. I'm sorry it took so long to respond - I have only been home to sleep lately, and I haven't been on the computer at all except for emails. I haven't forgotten you!

Here's wishing for lots of air conditioning for you. :)

Elizabeth McClung said...

I leave this hotel soon, but I hope the next one has wireless and I can post a blog - keep posting on time, I am not going to let a little thing like a wheelchair breakdown and a few exhaustions a day slow me down (haha - ug!).

Thanks, I was glad I was able to get to my appointment but the last 5-6 hours of today was sort of going, passed out.....stop breathing, start breathing.....go a bit more, pass out, etc. Finally at hotel to find that it is WHERE the fireworks go off tomorrow. Yikes.