17 September, 2009

Of favors and Being the inspiration...

Some goddesses are puzzled by this...like me...

I have been my fighter's inspiration before. I've made a favor before, and had it hang on his belt. He fought for me in a Crown. I watched him lose in two rounds, and then I commiserated with him over his loss. I knew much less of fighting then, having never marshalled or gotten into armor myself.

We went through a breakup as lovers do... I then had it given back to me and told that maybe I should give it to my new guy.... ? That was such a classless comment that I wondered why I had ever given out a favor in the first place.

It's also probably the reason that I've resisted making favors for any of the people that I truly love that I play with in the SCA that I should proudly ask to display my favor on their belt, arm, around their head, or neck....or anywhere else we deem appropriate. ;D

That new guy, became my husband of the last 17 years and my lord and the general guy that I consider an inspiration to live with. I took a favor and tokens class at Sport of Kings this last year given by Mistress Cymbric of the Isles, OL that totally rejuvenated my interest and love for the thought of being an inspiration and giving a symbol of that. But, since I absolutely suck at hand work, and it takes me forever, the real favor, a torse for my lord's helm is taking longer and longer it seems, but since his new helm THAT I BOUGHT HIM LAST YEAR is STILL not riveted so that he can wear it! I'm probably right up with his schedule. ;D

But my sweet daughter did her father proud and gave him a very meaningful favor full of symbolism to wear on his arm while he is fighting, it includes one of the first beads that she has made as a lampworker that was in his colors. It also includes two coin blanks for him to be placed on his eyes at "death" to pay the ferryman to cross the river. Such a creative addition to a favor! And each element has a symbolism to it that she explained at the firelit ceremony where she presented it to him.

I had to make do with a temporary favor to let him know how close he held my heart as he fought in Crown lists that day and how close he holds it every day. The picture at the beginning of this post was taken by Talon in the SCA who caught us as King Cedric was giving his invocation, and we were seriously considering the duties and responsibilities that go along with the wearing of the crowns of AnTir.

I'm still working on that favor. I'm still proud of my lord and the chivalry he shows and the love he shows for me daily, let alone the love and enthusiasm he has for this organization and it's ideals and fun. The group that is forming, it's people and our emerging traditions are just as inspiring to me as my husband is in everyday life. ;D

from a goddess who is inspired

16 September, 2009

No, he didn't hit me in the eye.

Some goddesses are puzzled by this...like me...

To those who have been following the progress, or lack thereof...the cataract surgery is a no-go, at least until after Christmas it looks like. Not like I was really looking forward to somebody that looks young enough to almost be my daughter at this point approaching my eye with a laser and breaking up the lens in the back of my eye. Then inserting a new lens through the incision and letting it unfurl in the place the old one was in before it was liquified by the laser...yeah, sounds like something I want to experience on a daily basis...not...for those who didn't catch the sarcasm that was dripping from those words. And the rank fear.

But, sight for the one eyed is not to be. In the photo eye scans they took two weeks before they would be doing surgery (it was scheduled for tomorrow originally) the doctor discovered that the uveitis is causing inflamation and swelling at the back of my eye again. The weird line drawing to the side is not a child's rendering of a hank of hair, or something else strange... ;D

The top line represents the normal shape, kind of, of the back of your eye in cross section.

The second line down is the original swelling I saw on the photos they took of the cross sections of my eye.

I still had some of the non-swollen area left in the back of my eye. My eye stayed free of any swelling for over three months after the initial injection of steroids into my eye socket to reduce the swelling.

Of course, this injection caused the cataract on my lens, which was kind of glossed over as a possible side effect...glaucoma was mentioned, and other effects were mentioned, but not the fact that the steriods themselves in that quantity would fog the lens in the eye and make it necessary to replace it. :}

The lower line is representative of the line the doctor drew for me this time of where the swelling is now that my immune system has decided to attack the eye again.

So, I got to go in and get another injection of steroids into my eye socket on monday.

Yes, fun and games boys and girls...it was almost as much fun to look forward to and experience as the actual cataract surgery, and now I still have that to look forward to as well. But now, I have even less sight in the eye until I can get the new lens in.

For those who are wondering, the reason they won't put the lens in while there is swelling at the back of the eye is because the surgery itself causes swelling at the back of the eye. The combination of the two can make you lose the sight in your eye permanently. Not something that I, or the doctors, want to risk. Even though I'm impatient to get back my depth perception, peripheral vision and all that.

Until then I'll just have to be...
the goddess of the lovely eye patch

31 August, 2009

My disability is better than yours? say what?

Some goddesses are puzzled by this...like me...
I heard a conversation recently that somewhat amused me, because I've heard variations of it before and the absurdity of it just struck me to the bone in this sense.

Two writer gentlemen, circling around each other all day and not really acknowledging each other, lol, amusing in itself, then, right before exit, one approaches the other and says the usual, "so, how have you been doing lately?"

"Between the cataracts, liver problems and congestive heart failure I've been doing fine, and you?"

The other, quick as a teenage boy's erection fires back in the same vein, "yeah, between the cancer, kidney failure, and blah, blah, blah I'm doin' okay."

I have to admit that I stopped listening in the middle of the second man's list to ponder the absurd aspects of the moment.

I've commiserated with people over their illnesses. You reach a certain age, and the talk has a tendency to run to kids and ailments for a bit of the time. And I've had people try to one-up me when I've talked about things that are wrong with me....normally I just try to let it ride and figure they're either right, and MUCH sicker than I am....or they should be. (Don't I wish I'd always been that sane? My DH has helped me in so many ways see the light. lol)

I've also had the other response, "oh, I know your headache pain is MUCH worse than anything I've ever had..." That one makes me grind my teeth as well. I know they think they are validating my pain by saying it. But it comes across as patronizing my pain.

I sometimes wish I could get a stage and the world's attention for 20 seconds and just say, "have compassion, pain is subjective, love each other." But I'm sure there would be much to fight over in the interpretation of those phrases as well. ;D

Pain is pain, sick is sick, limitations suck and you deal and go on with or without your friends and relatives help...pissing contests really don't have much of a place in the mix, but if it's what gets you through one day to the next, who am I to complain? My humor helps me out there.

from a mildly amused goddess of pain, in pain? causing pain? you get it anyway...

30 August, 2009


Some goddesses are puzzled by this...like me...
I had a great time last night, and last weekend, the weekend before, and the weekend before that...

All this summer socializing packed into a few weekends of seeing people I'd known for years and finally catching up because we all are in the right place, and space, at the right time.

We've made time to spend with family, and time to spend doing what we love in the current middle ages.

I also have been lucky enough to make some new friends that I'm coming to cherish as marvellous people who accept my slightly *cough* ascerbic wit, and my emerging compassion and can seem to understand that I'm trying to meld the two with the wisdom I've had to cultivate.

I don't think it's that I wasn't compassionate when I was younger, at least I would hope not. I would hope that it was that I was young, and arrogant, and being young and arrogant I was correspondingly impatient with the perceived weakness of those around me.

One of my best friends made the comment last night, "wow, S... is being more compassionate than I am, when did that happen?"

I understand that most people might have been insulted by this, but in my group of friends I was known as a tough bitch goddess who told it like it was...it was the only way I had learned to survive. I was brutal sometimes in the way I stripped people of their most cherished illusions, but the friends who stayed...mostly, loved that about me and the fact that, when they got inside my heart, I was this giant marshmallow who had a love and loyalty that stretched pretty much forever. I was the chief, I was mom, I was doomed to not be weak. Not even in my own mind.

That perception has changed over the years and it's only now that I'm working to rebuild my self image, but long term chronic illness has a tendency to do that in your life and this post is not about that struggle, or not entirely. ;D

Then another close friend told my daughter that I once was going to write a book called, "Bitchology." It sounds like something I would have said, but the title was probably all his, 'cuz he's a hell of a lot cleverer with words than I am. ;D

I think I could have made the book a hit...I think I could still make the book a hit! It's a great title! There is something to be said for being a bitch. My daughter has been gifted that title by my friends and she preened under it, and they praised her saying they were glad she knew it was a compliment.

And I think it is, because I think sometimes in this world that being 'bitch' is just another word for being a forthright, alpha female who can hold her own in the world. It will cause her problems. It already has.

But I would say much better bitch than victim if I have the choice between the two. Those were my choices, not my daughters', but I could only raise her as I knew to be raised as a female. She was a "girlier" girl. And she didn't have the sports opportunities that I did. She is so much more organized than I ever was and so much more her own person. I was very dependent on my friends' opinions, my family's opinions, everyone's opinions... but my own.

Seeing friends from long ago and seeing glimpses of our faces from long ago in them, I see the continuity and the beauty.

Being with old friends I just plain had fun catching up and hearing about all the stuff I haven't heard and where they've been and what they've done...even if they've blogged about it...It was still better to hear about in person.

ta ta from the goddess of bitchology

10 August, 2009

Chickening out for dinner...

Some goddesses are puzzled by this...like me...

For some reason if you add chow mein noodles and chicken and cashews to a salad...I like it better lately. I'm not sure my kids do, but what do they know? I'm the one that has to try to cook in this heat. And they're always the ones who complain I'm trying to overfeed them.

So I thought I'd share a recipe I just came up with that tastes pretty good. It's for a large group of people....but it should scale down just fine....next time maybe I'll add pineapple to it though....

Chicken Oriental Salad with Cashews

Number Of Serves: 16 Serve(s)
Preparation Time: 30.00 min
Cooking Time: 55 min


1. 8 lbs of frozen skinless chicken breasts
2. 0.5 t of vietnamese or chinese ground red chili garlic sauce (chilis in vinegar)
3. 1 c of Kikoman soy sauce
4. 1 T of Black Bean Sauce
5. 1 T of Hoisin Sauce
6. 1 t of chinese hot mustard
7. 0.5 t of ground ginger
8. 1 c of dried minced onion (1/2 c. if using fresh)
9. 0.25 c of Newman's own Lowfat sesame and ginger dressing
(may leave out, doesn't really add much)
10. 2 c of oiled, salted cashew halves and pieces
11. 16 oz of bag dry chow mein noodles
12. 3 oz of dry, candied ginger, sliced finely
13. 2 lbs of salad mix
14. 0.5 head of green leaf lettuce
15. 2 ea of tomatoes
16. 2 ea of kiwi
17. 1 ea of cucumber
18. 0.5 med of green pepper

1. Preheat oven to 375 F.

2. Mix soy sauce, chili sauce, minced garlic, black bean sauce, hoisin sauce, hot mustard, ground giner, minced onion and newman's dressing if using it in a small bowl.

3. Spread chicken breasts in single layer in two roasting pans and baste with sauce, careful to scoop onions onto chicken for flavor. Baste both sides of chicken before inserting in oven.

4. Put into oven. Cook 25 minutes. Turn chicken and switch racks that pans are occupying so all chicken cooks thoroughly. After about another 30 minutes chicken should be thoroughly cooked, juices should run clear. Cut meat into cubes and store the chicken along with all pan drippings in a large bowl in refrigerator to cool.

5. Prepare salad. Peel kiwi fruit and slice into thin rounds or strips. Peel cucumber, or not, to taste and slice into thin strips for color. Sliver the candied ginger. Mince the green pepper. Wedge and chop the tomatoes.

6. Layer salad and chicken into large bowl in an attractive manner with chow mein noodles and cashews. Add the kiwi, cucumbers, sliced ginger, green pepper and tomatoes and enjoy.

May be served with or without additional Newman's Sesame and Ginger dressing. I didn't think it needed it particularly.

Cuisine: American
Type(s): Barbecue/Grilling , Brunch , Main Dish , Meat , Poultry , Salad , Side Dish , Low-cal , Vegetables , Favorites , Original , Low Carb , Family/Historic

Author: Sondra Prowett
Source: Original

this recipe was produced using: Recipe Manager - Your Cooking Companion

Of course the 3 or 4 recipes I've read that are similar to this use tea in them somehow, but the last time I tried that it just tasted like I was trying to eat aromatic dirt in my salad...maybe I should have soaked the chicken in the steeped tea? But the recipe called for actually putting the TEA LEAVES in the salad. I'll never figure this stuff out. Oh well, just gives my family more to scratch their heads over as they catch me going down for the count.

For those in the know...they are taking bets now and tilting me in general directions of soft areas to land, "just in case." Sheesh! no respect!

That's the world right now for a puzzled goddess whose headed off to dream land. zzzzzzz.....

01 July, 2009

Other people paint the same ones...

Some goddesses are puzzled by this...like me...

It seems puzzling, but it's not. It's actually very fun to see other people's takes on the same artwork and how they finish it. One of my SCA buddies found another SCAdians links on Flickr and I've been out there looking at her stuff. What makes it even cooler is that it's someone I know. I took a begining charter making class from Mistress Leah with her.

Bopping through its neat to see what she's done, especially this one! When I painted it I had a bear figuring out the shadow play on it!

Here's mine! Which, of course, I like better, ;D, but the reason was more that I liked the three dimensional effects that I worked to get on the architectural detail. Not for any other reason.

You go Kewpdx! maybe sometime I'll actually be able to join the other Portland painters when they get together instead of painting up here in isolation with my mom and my daughter and trying to interest EVERYBODY ELSE! lol OH the plans I have for future classes! LOL!

27 June, 2009

Levelling the energy

Some goddesses are puzzled by this...like me...

This is pretty stream of conciousness. It's the morphine and the temperature of 102....it tends to make me free associate weird thoughts...

People talk about energy levels all the time as if they understand them. As if energy would miraculously appear out of thin air and pump them up and they could go on and do more and be more. The say things like, "I'm getting my second wind." Or, "I hit a wall." I drink in the chi of the universe. Feel the energy flow....

Most of the energy flow I feel is right out of my body...and of course it bites me in the ass on the way out.

I remember my disability insurance company trying to send a private investigator to investigate my claim quite a few years ago. It was soon after my dad died. Karmic timing as usual.

It was laughable in retrospect. At the time, I found it far from funny that this physically active 20 something single guy who had never had kids, a college education, tried to be supermom, been a computer professional, or been any kind of professional for that matter since he couldn't even keep a scheduled appointment, was the one that was putting the hammer of judgement down on my life.

He looked around at an overweight mom, who barely had insurance to pay for her medication to keep her disability under control and her meds that would keep her alive, that couldn't do much housework and had 2 children under the age of 7 in an apartment 1/3 the size of the house they had lost in the bankruptcy the disability had forced them through. The apartment might as well have been used to shoot a scene from "Cops" in it. A husband that was fighting his own disability issues, but working full time.

The investigator met with me once or twice and cancelled one appointment. Then told the insurance company I wasn't cooperative and obviously wasn't disabled because I wouldn't meet him on 2 hours notice when he rescheduled an appointment in a town 10 miles away and I couldn't drive. But I was a flake in his mind because I had broken teeth and couldn't afford dental insurance and spoke of only having so much energy in a day to get me through.

When you look ill, or run a temperature, people expect you to go lie down. When you look....say it with me....JUST FINE! People make all sorts of judgements. They'll expect you to remain self-sufficient and when you aren't, they'll ask what they can do to help, but God forbid you actually have worked out an answer or call on them for help. That's when the excuses come out.

I guess I've been lucky? I can count the times my immune system has been healthy enough for me to run a temperature in the last ten years on my fingers. You'd think, because it's so rare, that I would immediately lie down and try to get better. Wrong! If I'm running a temperature I'm actually probably in BETTER shape than I am normally, at least my immune system is fighting.

I was running a temperature of 102-105 degrees the 10 days we had to move out of our home while it was being foreclosed. I didn't have the luxury of checking into the hospital. Luckily, my sister and niece helped my husband and I a bit and my parents watched our kids a bit or we would have lost everything else we owned. No one else could help. I still remember how dark that time was. I was very bitter about it for a long time. I felt like I had failed my family, lost our home, and lost all our friends all at once. I collapsed into bed in the den of my parent's home for about 3 months after we loaded up and moved all our stuff and got through the bankruptcy hearings. I don't remember much from that time but physical and emotional pain.

I'm only dwelling on this now I think because I'm trying to put things behind me and move on with my life. The bitterness is doing me no good. With the new meds, I'm out of the pain haze enough that I'm thinking again so I'm remembering more than just the day to day which makes me sad for all the people that I thought I knew. Because I'm dealing with the pain clinic again, I'm required to go into therapy, again, even though the therapist doesn't seem to think he has much to teach me. I'm sure there is...I've had 47 years to screw up this psyche...there's got to be something in there for him to fix! He's another one that I want to introduce this book to tho'. He seemed so absolutely floored that I could speak coherently and string two sentences together. And if I'm what he thought of as being a very cognizant and highly intelligent patient who had all my faculties....I'd hate to see what he deals with the rest of the time.

There are so many holes...so many holes were the pain has eaten through my brain and the cobwebs just can't spin to close them fast enough.

I'm running temperatures again, which means my immune system is the healthiest it's been in a year or two. Viva narcotics! I had so adapted to living with the pain and the lack of energy that I had forgotten why I wanted to live a life.

I have good days and bad days. The bad days had way started to outnumber the good and when I was delegating most of my living...I didn't really feel like I was living... I don't wait to recover anymore, I guess that's the biggest lesson I've learned. It's the lesson my husband hates the worst. He considers it giving in. I consider it adapting to the new situation and moving on.

It's time to adapt to the new pain level and move on. Luckily, the current level of narcotics allows me a breather for awhile to do that....3 months ago I didn't feel optomistic enough to have that option.

Now it's off to see what my fever induced dreams want to tell me....
from the goddess of night sweats or day mares

22 June, 2009

It's all in your head.... Really!

Some goddesses are puzzled by this...like me...

Just Fine....

"Since family or friends cannot see the illness, how can it exist? And how can someone believe that the illness is real if everyone around them doubts or scrutinizes it?"

Same book, different quote. I lived this quote for so long. With every migraine, every paralyzing muscle ache I couldn't explain, until even I wondered if I was causing myself to feel the pain and started to blame myself for putting myself through this rats' maze of doctors, doubts, and debillitating illness. I thought I must be mentally ill or I wouldn't want to be sick like this, right?

I remember the same kinds of reactions when I was a kid and finally got diagnosed with a "nervous stomach." Now I just live on immodium, preperation-H, and peppermint tea. Then, I always assumed I was at fault, hmmm, I guess I kinda do now too, lol...guess I haven't grown up as much as I'd hoped, huh?

[if you have a little know illness or condition, and if the symptoms are not visibly apparent, the reactions you receive can change dramatically. "Those with hidden illnesses are often treated with disbelief and thought to be hypochondriacs, whiners, malingerers, or difficult patients," says Higgins. {Bejai Higgins} They can sometimes receive dismissive medical treatment. These discounting reactions from health professionals, and sometimes the patient's family and friends, can begin to generate self-doubt. Self-doubt, left unchecked, can lead to depression and isolation.]

Hmmm, that self doubt thing always sucks. I always have to wonder, do I REALLY want to spend the majority of my life in pain and struggling just to get out of bed?

.....HELL NO! Days like the last few are a good way to answer that!

I finally have a bit of pain relief with going back to one of the old anti-seizure meds I was on years ago that I became accustomed to (so it stopped working) and they added some slow release narcotics to the mix. While I prefer to be in control of the narcotic release so that I can use them only when I really need them, I have to say that I'm getting more done today housework-wize than I have done in months. But I have to constantly counsel myself to be careful, not to overdo just because the pain is in the background.

A good day does not mean a cure...all these litanies have now become part of my internal mantra, because otherwise I try to fight all those doubters and all those judging eyes and push myself WAY past what I should do and pay for it for weeks to come.

For years I listened to the people, and my own head that said, "if I think healthy, then I'll be healthy. If I don't think about my depression, it will go away." This may work to some extent to help me summon energy, and it's helping me do chiqong to try to get the nerve impulses rerouted around my damaged disks in my neck, but I also need to deal with the reality.

The years I've spent fighting this have actually made this so much worse and made my illness so much harder to deal with.

If the energy I'd put into pretending I wasn't in pain or was well had been put into healing or increasing my energy like I did very early on, before I stopped trusting myself, I might have come to an accomodation with this and been able to balance my energies instead of spiralling into depression and starting to believe the sarcastic and mean things that people whisper.

For some reason, the more things that you have wrong with your body, the less sick you are thought to be...somehow that's a medical community correlary. It holds true in the real world too. Maybe it's just that people expect lies to be complicated and so if you're really sick and it's complicated they think you must be lying? I don't know....just trying to think of some excuse for the crappy subliminal attitudes over the years. ;D

I've gotten to where I don't want to say much of anything to anyone because they'll have that long suffering look that says, "here she goes again, another laundry list of symptoms. What is it NOW?"

[They feel that the illness is their fault, and this is often a belief that is confirmed by others. Even their doctors can sometimes not locate a reason for their pain or discomfort or the array of symptoms they are experiencing. And sadly, sometimes their spouses do not and cannot understand the illness.]

The blame game and being at fault, oh boy do I understand that one! Wow, how many times have I offered to give my husband a divorce? Not because I hate him and our kids, far from it, because without having to deal with all the issues of my disability and medical problems their lives would be much smoother. Luckily, Rick is more understanding than I probably would be in his position, though I hope I would be better than some I've met. (Maybe I'm paying back Karma for being a judgemental bitch in another lifetime? hmmm?)

So often it comes down to a choice, would you rather mom did this, or that. Went to this game, or was with the family for a weekend. Medicated herself to attend your school concert, or had a family picnic with you? Did the laundry, or made a family dinner?

I and Rick have worked it out to a fairly good degree. And we are pretty well aware of the realities of living with this thing called disability that tries to suck so much life from our family. I am lucky in that we both believed in the vows we took. We're still waiting for the "in health" part to come around....

The kids have learned responsibility, but I don't think it's necessarily a bad thing. They have compassion. They have also learned impatience for having this alien THING that takes over part of their family whether they want to allow it or not. But the kids actually get more quality talk time with me than I ever did with my parents. This may not be a good thing according to them. ;D They actually have told me that they appreciate me keeping an accomplishments/pain level chart up on the fridge because it gives them some idea of what I'm dealing with and they don't have to be detectives to figure it out.

In 1996, with a toddler and a newborn, with Rick being a house husband, having a doctor refuse to sign a return to work order for me was the worst wake up call I have ever gotten. It destroyed my sense of self worth. We lost our home, went bankrupt. I lost my career, my livelihood, my friends, my social life. Hell, I even lost the ability to balance a checkbook! (I still struggle with that monthly. No wonder they didn't want me managing multi-million dollar projects....hehehee!)

So much of my sense of self-worth was tied up in my career, and now I can't even solve simple problems in life without anxiety attacks. If I push to do more than 2 or 3 hours of ANY activity per day, I have to recover for multiple days....those are the ones other people don't see.

Yet there are still many people who are convinced that I can just, "get up off my fat, lazy ass and get a job and support my family, and I would be just fine." Yes, that's a direct quote. It was only said to my face once, but God, I've seen it in so many eyes over the years, heard it in so many questioning voices, in so many insincere offers of help....

The person who said that to me is reaping what they sewed. I personally am hoping that all of those that have had those kind of non-compassionate thoughts about a situation they really know nothing about don't ever have to live in this kind of agony to learn their mistake. I can't even wish this on them.

Our family time and leisure time has been totally hamstrung to cater to what mom has energy to do. I have to be careful and remember to not overdo things when I'm medicated because I'll pay for it with the exhaustion when I come down.

It's taken me years and I'm still only now overcoming the guilt that it was my body that failed my family this way and that I'm the one that has to be constantly accomodated.

Can we please go back to it being all in my head?

from the puzzled goddess of painful truth

21 June, 2009

Just fine.....

Some goddesses are puzzled by this...like me...

That which doesn't kill us?

I picked up a new book a few weeks ago. I normally refuse to read books about illnesses, etc. and the latest, 'new cure.' Been there, done that, and have way too many versions of that t-shirt.

I keep up with research in the diseases that I know are eating away at my immune system and other parts of my body and follow various newsletters over the internet. I gave up on books awhile ago, as the information lag behind the treatments I was already receiving was just too great.

But this one is a bit different. And I've been approaching things a bit differently lately. It always seems like I have to once more let myself cycle down through the very depths of feeling like absolute crap and being in an amount of pain that is uncontrollable at an intolerable level before either: a.) I get up the gumption to tell the doctors that they better do something about it and we need to try something new, or b.) they notice that I'm particularly suicidal and decide we better do something different and try something new.

Why I'm in a different head space this time I think? is that the number of weird conditions that Western medicine doesn't really like to explain that are effecting my health are now being added to with all those sucky conditions of old age that Western medicine recognizes and seems willing to treat. The doctors keep shaking their heads and adding a new weird diagnoses for every 'normal' condition they add though. I'm up to 10 or 12 now that I'm fighting and trying to balance.

I pretty much try and only worry about the immune system ones that are actively trying to attack my organs and eyes and glands. And the ones that will actively kill me or really make my life go through major suckage by making things be amputated or worse if I don't keep them under control. You've got to have some priorities, right?

We have three or four names for the immune system crap. Chronic Immune Dysfunction Syndrome, Fibromyalgia, Myofacial Pain Syndrome, Hashimoto's thyroiditis....any others? Something else will probably jump on the band wagon. It's not like they have any great tests for these. They go on symptoms. So they theorize that my immune system decided sometime in my late teens or early 20's that it didn't like my body. Western medicine still lacks tests for most of these to find them before they start harming the body, and even after they do, they can only treat the symptoms.

Huh, makes me sound like I fit in with every other person in this book. The subtitle? "Unmasking concealed chronic illness and pain." Not that the pain is all that concealed...not from ME anyway! and based on how bitchy the family says I can get when I'm not making the effort to be nice...

Well, golly gee, Mr. Wizard! Organs being attacked and stopping working gets painful sometimes and when you don't have much of a metabolism because your thyroid barely works...and what does work seems to be under attack it's kinda hard for your body to function with what the diabetes leaves you....hmmmmm....I guess I just got no excuse. One of my new doctors didn't even look up what Hashimoto's was and what it had been doing to my endocrine system/digestive system before she decided that I make poor nutrition choices and have an improper diet.

Actually, I eat keep track of my diet better than most skinny people or dieting people I know. I eat 1000 calories less a day than I should to maintain my weight most days (to a diabetic a carb is a carb is a carb nowadays and I eat WAY more veggies than I EVER did before!) Yes, even on those awful days at Izzy's when I punk down the HUGE amounts of carbs because they don't have much on their menu but deserts that isn't loaded with preservatives and chemicals (and even those are borderline....yeah, yeah, you all know the rant...) I STILL manage on those days to come in under 12-14 carb units which is at the upper end of the scale of the diabetic diet I've been following, pretty religiously for, oh, about, 6 years. It's not like it's hard. At my size, I'm allowed quite a bit of variety to maintain my body weight and the big change lately has been the huge increase in fiber and veggies for me to balance all the weird things the meds are doing to my system.

But my Hashimoto's thinks I'm starving anyway.(this thyroid crap started back in about 1990 for my body, yippy yay!), but my diabetes thinks I'm not." And anyone who knows me, or has seen me eat knows I'm not starving ;D You'd be surprised that the meal I'm eating may be the only real meal of the day, but I do eat right.

....and the judgements? from other people? keep going on, and on. This woman was a doctor. What chance to I have against the judgmentalism of other people? I've gotten so tired of the lectures from the people who have all the answers because their brother's cousin's wife's aunt, or their family, or they... compassion is lacking in these people in that they even think to judge or lecture. This book is for people like them. And for me, to help me remember to take a deep breath and walk away. They aren't worth it anymore. My energy is too scarce. People who are going to judge me on whatever criteria they've made up in their head, for whatever reason, whoever they are, I can skip knowing.

Maybe if more families or friends or doctors read it, they would remember compassion when they were dealing with other people and stop judging. Maybe more relationships could be saved.

Recently I finally put my foot down and told the doctors I need better pain management. Yes, I look "just fine." I look like some healthy, middle-aged matron who has over-indulged all her life and is now paying for it.

Goddess, don't I wish. I see that judgement in the eyes of even my friends and I want to tell them to walk even a few hours in my shoes, let alone a few years in unrelenting pain that is blinding and doesn't allow thought. To add in my thyroid system that has been shutting down for years and struggling to have to place one foot in front of the other or bend over to pick up a paper dropped on the floor. I still do those things. It just takes a lot more time and a lot more effort and many more days.

I am digesting this book slowly, because it is written about people like me. People who don't want pity. People who are just tired of being judged. If I had a nickel for every offer of help I'd gotten from those same friends and family that then had some excuse for not being able to be there for me when I really needed it, I would have been able to pay for the specialist my neurologist wanted me to see in San Fransisco! lol

I can remember so well always running here and there to do this or that for this person or that and never having time to catch up on anything for myself...I still don't, but now I don't have any energy for anything for myself either, so it balances, sorta. ;|

There's a quote here on page 31 that resounded with me:
[ 'It is very frustrating when you are raised to be active, and you have talent, but you are no longer able to do the things that you enjoy.'
People with chronic illness or pain are survivors, and accepting limitations is in conflict with the code that survivors live by. No one wants to be sick. No one chooses to give up those things in life that bring joy. Yet at some point, people with chronic disorders need to learn to say no to many things that have always been part of their lives. Being told to look on the bright side by well-meaning friends and family members simply adds insult to injury. Positive platitudes and quick fix suggestions trivialize pain and symptoms and cheapen the impact of these difficult and relentless challenges.
Chronic pain is real yet it becomes difficult to talk to friends and family about it. Not only do people want to be free of chronic pain, they do not want to feel like a burden. "It's a large part of who I am. I just don't want to be pitied by my friends or to be known as 'the suffering one' to those I love or the people I work with,"...." Everyone becomes tired of hearing about how much I hurt, incuding myself! Some people think I am making it up or exaggerating my symptoms. But chronic pain is very real. Even the medical community doesn't always take my pain seriously." ]

I could so relate to this. I just don't want to talk about my health all the time. That's why this blog is about other subjects: my kids, tea, fashion, the sca, films, weird stuff, things that strike me as funny. Quotes from books I'm reading.

This book just happened to hit a particularly strong cord, and it probably doesn't help that they are changing my meds, and I'm feeling mental and whiny. It's father's day and these days, when I miss my parents I always realize how young they were when they died. I look at I and my siblings, my cousins and realize how young we all are for the kind of things we're already facing. I never expected to be under 50 and sharing the "old lady" symptom and medicine comparing conversations over the phone, you know?

Today I have to realize that my dad and my husband are probably the two people who have come the closest to understanding what I live with on a daily basis. I thought my dad was overprotective.....I think my husband is most of the time as well.

So, what does that say for my sense of judgement?

Probably means I picked the best possible father in the world, who I miss a whole lot today, and that I couldn't have married a better man, huh?

from a puzzled goddess who looks just fine thank you

29 May, 2009

Don't take it even if they offer...

Some goddesses are puzzled by this...like me...

I made that mistake. It seemed so innocuous. How bad could it be. I'll try most things at least once. I've even tried sushi multiple times because people keep telling me that THIS piece is different, and I'm SURE to like it. NOPE. Not goin' there. Vinegar and I don't get along. Most acids and my stomach get along WAY too well. Not a fan of anything pickled in any way, shape, or form. Hmmm, kinda leaves sushi right off the list. Plus I'm not real big on the seaweed thing. Don't mind it in soup, or soap, or ice cream. You get the picture.

I'm a plebian at heart. My tastebuds are those of an uninformed 3 year old. Actually, when my kids were 3 year olds they would try more than I will. I've tried it, and I DON'T like it!

You know, this could be about so many things and only my dear husband, or those who know me really well would guess the real subject....freeze dried ice cream!

It has NONE of the benefits of real ice cream, the cold, the smooth, the texture, the yummy goodness. It is truly, pretty gross and has all of the ickiness of melted ice cream: the heavy taste on the tongue that coats it, the overly smooth and sweet flavor. Uck!

I even tried strawberry thinking it would be more innocuous than chocolate...nope. It's got a high ick factor!

Just putting it up there on the list with sushi and cinnamon on meat products as things I don't care to eat...oh, and processed cheese food...how can they even call it food?

from a puzzled goddess with the tastebuds of a three year old...nah if I was a three year old I'd probably eat that cheese stuff, huh?

01 April, 2009

I thought I already passed this class....

Some goddesses are puzzled by this...like me...

Why do moms get their stomaches all tied in knots when their kids have a problem, or are having trouble with a class? Is it just me? Or do all moms do this?

This is pretty typical of how the kids are sleeping this week.

We've been able to revisit Romeo and Juliet this term...term paper editing tomorrow night!

I told the boy and girl about a year ago that their science homework was to the point that I couldn't really help explain things to them anymore....it doesn't seem to matter. I hated physics in high school and hated it more in college...so guess what they were in Washington, DC while it was being covered and sick for the explanations? Right. Physics. Laws of motion. Newton and crap. Ugh!

I know how important some of those concepts are, but it's the last week of the term and all work has to be in by Thursday. Guess what the boy is having trouble with? Yep. My favorite subject!
The dear hubby hates math and I get stuck with explaning those concepts to the kids, why can't he explain the science? Oh yeah, he didn't take that much science either! Crap!

The kids were both sick with high temperatures the week before spring break and missed a week before that because of their trip so it's crunch time. They only have a few days to get their work done and caught up, and now mom is running a temperature and has been for 2 weeks despite all the anti-inflamatories I normally take. :(

I guess it's nice that I finally have a temperature to break...it means my immune system is finally trying to fight the illness. But my lungs were much happier a few weeks ago. Now coughing hurts, thinking hurts (what's new?) and hell, even sleeping hurts.

Since this is the last week of the term, hubby and I also became grandparents for the last few days to obnoxiously robotic plastic dolls that have a VERY high creep factor. Ick! If babies looked and acted like this, the human race would be dead within a generation!

The girls little 'boy' was Jack, and no, the eyes don't close, it's always got that creepy Chucky stare.

And the boy's, "little darling" girl was Jill...told repeatedly and often to shut up.

This excercise seems somewhat futile for my children. They already got the point. They are in no way ready to be parents and don't want to be.

Mom and Dad have had some fun, though. Telling them all those grody infant stories of when they were babies!

At least this way they've heard about the joys of exploding diapers and 4 am feedings before they had to experience the fun for themselves.

from grandma puzzled goddess

30 March, 2009

Even goddesses get the blues...

Some goddesses are puzzled by this...like me...

I always thought that losing mental capacity, and knowing it, would be the worst disability to face and deal with. It's tough, it's grueling, and it makes you feel like an idiot most of the time, but you learn to live with it. Pain has this wonderful tendency to cut your cognitive abilities by large amounts and your brain functions become all about getting through the next moment or the next required task. If you are old enough to remember skipping records, it's kinda like that...repeating the same groove, over and over and over and then maybe getting beyond it to fall into another one.

Weirdly enough, my family and I have learned to live with this. The hubby and kids finish sentences for me and play 20 questions with where they think my argument was going. They put up with me snapping at them and then realizing I've been a bitch and apologizing. They put up with the days I just can't do much and all the times that plans have to be changed, or mom can't go, or mom has to be so drugged out of her mind to go that she becomes a happy pill popper hyped up to the gills who won't stop talking. I just don't think adding more crap to this is fair.

But then again, I stopped believing life was fair a LONG time ago. Karma really sucks, and I must have done many really dreadful things in other lifetimes...if this is what I deserve in this one, I've really screwed up somewhere.

For some reason, my immune system doesn't much like me. The doctors, as usual, can't seem to figure out what syndrome or disease or whatever it is that is causing things. I was finally told that my thyroid has settled into a disease called Hashimoto's Thryroiditis. Along with the fibromyalgia, and now my uveitus, all of these conditions are linked to an immune system that is attacking various areas of the body, but no one can figure out why. None of these immune disorders have very good tests, and the few tests they can do have all been inconclusive. Go figure. (An upside, at least I now know I don't have syphilis! *gee and did I ever think I did?*)

I mean, the other 3 or 4 things that are going on are physical and people can relate and figure out. I did some ripping of my rotator cuff it looks like, so I'll be seeing an orthopedic specialist for that. I have some cervical spinal degeneration so I'm seeing a PT for that, and the chronic daily debilitating migraines which everyone seems to know how to cure with the snap of their fingers and figures I'm too dumb to have tried just about every cure on the f*cking planet for...(sorry for getting hot, I may NOT have heard about the cure that worked for your brother's, sister's cousin's niece yet, but after 35 years of research, I've tried most of them and it's irritating that people don't give me the benefit of not being an idiot...but then, I know it's human nature to want to help...I really do...I just get frustrated by it all.)

Back to the immune system though...for those of you following along with the story, there will not be a happy ending, this I somehow already figured out. Ya think. ;D

It wasn't explained to me very well, if at all (I really don't remember it!) that the cortisone shots into my eye socket would further damage my eye. I knew that my sight probably would not come totally back to where it was before my immune system decided I didn't need a left eye, and that I would eventually lose more sight, but I thought the cortisone would improve things a great deal more than it has, and on top of that, the cortisone actually is giving me cataracts.

So with every shot I will lose more vision and the world through that eye will become hazier. I'm hating that I've turned into a fricken whiner about it. I thought I could take blindness, and it's only one eye, but I can't see clearly enough to read without a great deal more light nowadays; I'm having trouble seeing the computer screen, I can't paint and illuminate the medieval stuff I want to; I can't take photos that aren't fuzzy, no matter how I adjust the camera. Every time I turn around I discover a new thing that is impacted by my lack of sight in that eye. I make jokes about what mom can't see today to the kids to cover for the fact that I'm scared sh*tless and really don't want to lose any more sight. And, as usual, the eye looks perfectly normal.

I guess that most of us can look forward to cataracts when we're in our 70's or 80's...and nowadays the surgery for them is fairly routine...unless you have the retinal scarring (sneaky eye) that I do. But the hubby looked up the reasons and hows of cataract surgery and now we are both wondering why they are waiting to do it on my eye....so that's my next question for the eye experts at Casey Eye. Why do we have to wait for total blindness to overtake that eye before we put a plastic lens in place of the protein lens that is clouding up? Does the swelling in the back of my eye have to go down first? So that's the question that I'll be asking when I next see them in May.

Oh yeah, to drive at night they suggested I get an eye patch. Driving one eyed is perfectly legal and the patch would help the glaring reflections I get on that side from the oncoming headlights flashing in the cataract. R still isn't buying letting me drive at all though. He says it's to protect me and the other poor fools that might be sharing the road with me...maybe he's right.

from the pirate goddess

18 March, 2009

Castles are kewl...

Some goddesses are puzzled by this...like me...
Or not. We got to hold an event this last weekend at the Husum Castle in Washington. Very cool place. It's normally rented out for weddings, but we have an in. ;D

It was a kick to wander around in garb at a location that was closer to medieval than most things in this country.

Here's Kerryk in front of what I believe is the south face of the castle.

We spent most of the day feasting and merry making in the castle's main room.

The stairs down to the kitchen were curved and narrow in the tower.

While the kitchen itself was small.

On the opposite side of the castle from the kitchen access is the main building which has 4 floors plus a basement.

Each floor has a bedroom suite and a bathroom. At the very top is a party room that is open to the outside air and has a small, "musician's gallery" off of one corner in the top of the tower.

All in all it was a fun day, we got to hear epic poems, songs, and stories; play games; participate in lampwork bead making; and eat lots of good food!

from a puzzled goddess feeling medieval...

13 March, 2009

Nightly meditation is not enough...

Some goddesses are puzzled by this...like me...

For years now, I've meditated. Different format, different breathing patterns, grounding and centering or not depending on my goal in the meditation. I now have 3 new ways to meditate! lol (Do you suspect it's as much of an overkill as I do?)

The yoga-like one I've never done before though. ;D Mostly because I always felt silly getting into a position like that and reciting a mantra. But it's what the pain center experts want me to try, so we do it.

(I'm still thinking permanent studs in the head might be more fun, and think of all the airport metal detectors I could set off! wee!) Darn, I guess they use gold, and at least they know it has a chance of working in dogs. ;D

from a puzzled goddess

12 March, 2009

Sneaky eyes and nays...

Some goddesses are puzzled by this...like me...

If I could have said no....I probably wouldn't have. Found out today, from the top expert in the state, that my uveitus is chronic and will reoccur throughout my life, and that my vision hadn't improved much in the last few weeks as we awaited test results. (no shit?!) I guess at the 6 month point, they consider that this isn't an acute attack. It would have been nice if they'd figured this out before I ended up with retinal scarring, what the eye doctors called sneaky eye....my eye has basically decided it doesn't much like letting light into it. It does have a pretty cloverleaf pattern to my pupil now though. ;D

Once again, my body tests as fairly normal, I probably don't have Sarcoidosis, Lupus, or Lymphoma. I've only currently got symptoms in one eye, and the tests came back okay so they're thinking the cancer thing isn't it. They're pretty positive it's not a virus (the inflamation is more prevalent in the back of my eye than the front which is indicative of some type of auto immune response.) They explained it as being like arthritis...ie. arthritis is your own immune system attacking your joints, this is my own immune system attacking my eye. Ergo, no solution, no underlying cause, and as usual we treat the symptoms.

I got the needle in the eye socket thing today. I was misled; they didn't stick it through my eye, just around my eye socket...the actual aim is to miss putting it in the eye entirely. (Gee shucks, and I missed that?) The treatment is supposed to be about 70% effective in most people, but less risky to me than if they gave me oral steroids to try and treat the inflamation systemically. (My whole well-padded body thanks you for deciding against that...runs of steroids are part of what helped me add to my Junoesque frame!) I can get these shots about every month, if it helps reduce the inflamation and swelling in the back of the eye, but I have to be monitored every few weeks to make sure the pressure inside my eye doesn't go up. (I don't know if the eyeball bursts if it does, don't really want to know...just let me live in blissful ignorance.)

My dear daughter spent most of dinner watching my eye swell and commenting on how horrible it looks...she's right. And the darn swelling in the socket looks like a blistered bag under my lid that I could pack clothes for a week in! My CPAP breathing mask doesn't much like the fluid there either, everytime the mask shifted it woke me up...which is why I have time to update my adoring public with all the gruesome and boring details.

Life's okay, R is tired and the kids already have spring fever...
more later from a puzzled goddess who may soon be able to drive again...fear me.

11 March, 2009

More of life intervening among the living...

Some goddesses are puzzled by this...like me...

The eye, something they are calling uveitus is still decreasing my visual field to half. I've been referred into another pain clinic to let them put me through their paces and see if any new treatment stuff pops out. Not holding out much hope, but it's bad enough that I've got to spend some real time and effort to see if they can do anything that will help alleviate some of the pain.

Had some xrays and an MRI done; another pschological evaluation (oh, please, tell me I'm imagining this so you can tranq me and let it stop!), and today another PT evaluation. It sounds like they have a few new techniques I haven't tried yet...we'll give it the old college try and see how it goes, not much it can hurt.

Tomorrow we talk about the needles in the eye. They can't seem to find a cause, and the symptom isn't going away, and since the symptom is almost total blindness in that eye....well they're finally going to do something about it. Yay! and scared at the same time. But I've been missing my sight there since August and I'm starting to worry about more permanent damage. There's already retinal scarring around my pupil...the eye won't dialate very well....it looks like a chewed up flower edge when seen with the optometrist's cameras. (Here it just looks fuzzy and almost blue...no, it doesn't belong to smurfette! She can get her own!)

I'm up because "medicine is gggggooooooddddddd" especially after a day of bending, twisting and being stuck in a tube that roared and was 2 sizes too small for my current well padded and claustraphobic bulk. Yuck! Came out of there shaking. But I sure wasn't gonna hit the panic button and have to nerve myself up to start all over, NO, and HELL NO.

I've still got the sniffly flu and am sleeping when I can, cooking and doing the occassionally housewifely laundry pile when I can't and struggling to ride herd on 2 cats in the form of teenagers who need to be kept on track so they get some of their time for themselves!

The kids had a cool trip, and for those who didn't hear all the details, I'll post more later when I can access their pics. Great experience and mom and dad are so proud! R is hanging in there with his winter/Spring SADS and we all are just trying to hold it together until our budget can recover from the rape by the oil companies this last year.....wouldn't it be neat if the government made the oil companies contribute those usurous 'record profits' to bailing out the nations banking system....gee, or just tax the shit out of companies who bomb the economy and try to tank the country just because they can.

from a puzzled goddess in a funky mood....later....

24 January, 2009

Life's been getting ahead of me lately...

Some goddesses are puzzled by this...like me...

The pain's been bad, life has been hectic (gee, maybe the two are related?) I've got Iritus in my left eye and have had since late August-early September and am a bit concerned about trying to clear it up and maybe save the sight in that eye. But I'm not typical...my eye isn't all red an nasty looking...as usual I just don't look sick. Good or bad? You look normal, so why can't you do it?

Believe me I think about it. I'm not saying that I want to be an amputee, or blind in a way people can tell, or anything like that. I guess I just wish people were more compassionate and less judgemental of other people. This blog gives me a bit of hope occasionally, when I get feeling down this way.

Love you all....from a puzzled goddess