Yuletide Cheer and all that stuff...

Some goddesses are puzzled by this...like me...I love the holidays. I love entertaining and seeing my family and having people over. I always have. But I don't like the drama. I really just want everyone to get along and have a life supported by loving people. My mom was a drama Queen. She was in a tizzy any time we had people over and would clean a clean house for days. ;P

 I SO wasn't going there. I was informed by my soon-to-be-ex many years ago that I was turning into my mother. I would get all tense before we left to go anyplace and scream and have fights...I then realized it was because I was always ready 30 minutes early and he was always 30 minutes or more late and didn't have his stuff together. So on top of doing my stuff and being disabled and feeling like crap I'd be trying to organize his at the last minute and get the kids moving, because they knew that the time stated meant 30 minutes or more late, and it was ALWAYS more stress than I wanted to deal with. LOL My daughter still fudges times with us both to get us going "on time." She's starting to realize that I'm actually getting ready at the time she says and now am considering HER late. LOL My son...well...we're always walking out the door while he's still brushing his teeth or getting his coat or something 10 minutes after it was time to go and waiting for him outside.

But all of this aside, making food for people I love and seeing them enjoy it. Being able to give them some small gift of my heart even when I'm broke. Letting them know I thought of them and love them and welcome new members to the family table. No matter when the holiday is celebrated.  (and no matter how many pain killers I need to swallow to get through the day!) I'd almost  prefer Christmas or a Yule celebration in July...just to divorce it from all the rest of the crazy of the season and get the family together for some gathering time to bond in a time less fraught with stress for all. But then employers don't give time off for the Summer Soltice do they? and when you are baking and sweating it just doesn't seem as fun to get together with family as when you can go sliding through the ice and snow.
from the puzzled goddess shivering under her nice warm blankets on this Christmas Afternoon.

Hazards of the Walk

Some goddesses are puzzled by this...like me...you'd think when they put in access for handicapped people they'd have disabled people help design them.

The bumpy yellow strip used on these types of ramps for traction are slick under your feet in rain, ice and snow and painful to cross for me with arthritis in my back, knees and arms on a scooter or walker. I expect to be in pain going across a railroad track, and avoid as many as I can, these they've set up so I can't avoid!

This type of  ramp however, that is actually made as part of the sidewalk causes no pain when I go over it and yet still gives me traction. The cobblestones are nasty, but that's another story! LOL

 

And worst of all...in the Lloyd District where they are trying to be hip, trendy, cool, and who knows what else....

In this light, the depression is visible. But TWICE I have managed to walk straight off the curb because it wasn't a clearly marked ramp and they were in an unexpected place. Both times were in broad daylight. It doesn't help that I have macro degeneration and can't see well. But if I can do it and end up tearing my meniscus in my knee on my walker because I fell straight on it IN BROAD DAYLIGHT at 9 AM!!! then other people can as well. I then did it a few streets over a couple weeks later. sigh.... I now know to be extra careful to look out for the d@mn fricken ramps because their beautification is more important than safety. But it's definitely the pits to remember.  Don't get me started on sloped sidewalks because of driveways, or just because whoever put them in was an @ssh@t and cracked concrete and asphalt I'm expected to navigate over and sections of sidewalk that are raised that I'm somehow magically supposed to levitate to get up on, or better yet, streets that have none at all?
 Or the streetlights near my MAX stop that are always out and since they are the new directional lighting they darken the entire block and make me feel totally unsafe to come home in the winter after 6pm.

Yeah, that makes you feel really safe when you give up driving because of your disability and how unsafe you really are on the road and how bad your macular degeneration is? NOT. I'm really happy that transit is here and available and accessible, and I know that people who pay full price get kind of pissed of at the disabled because they have to wait for ramps and give up seats and get squished by walkers and move out of the way and wait on doors so the ramps will come down, but I CAN'T drive a car right now. I have NO CHOICE. Transit or walk. If I move I need my walker and it takes some room. Yes I paid my taxes and I'm sorry it slows you down but I can't bike it. I would if I could. I had a mobility chair and quite frankly, this is healthier for me and uses less room on transit. :D So the next time you get impatient, remember that you are probably very much ABLE to drive, the person in those seats may not, probably isn't able to.

 

From a frustrated goddess on a walker...

Flavor rant...keep your chemicals...

Some goddesses are puzzled by this...like me...
I remember hearing about a post on a blog or a story on the TV news or in the press when Starbucks made the decision to use Strawberries to color their cold drinks instead of red dye no. 40 or whatever.  It is that dye that is in everything you seem to buy with the least tint of red in it. And I thought it was ridiculous it was even a story. Starbucks should have always been doing this.

It must have been a slow news day. Somebody's cat up a tree and miraculously finding its way down on its own was a better story. But the press gave lots of time and room to...this.

     But hey, it's not as if you CAN buy natural food, made the way it should be grown. In the best way for the plant and for the human consuming it unless you make a special point of buying organic and have everything specially handled. It's amazing to me that you pay a premium to have nasty shit kept OUT of your food. Gee, I don't want you to put anything I can't spell or pronounce into my food, and Oh, here I need to pay 200% more for you to do it?! It has NEVER made sense to me. But then our food supplies wouldn't survive a nuclear holocaust and my Mother's pantry wouldn't have had food in it that was 2 or 3 years past its expiration date. Someday the cockroaches will love us, after they learn how to chew through the tin cans.

I know I'd be much happier in my life if the chemical garbage that polluted my food hadn't polluted my body as well. my theory is that those chemicals don't all leave as waste products, because that would be too clean...and just wouldn't really fit in with the chemistry in our innards. Think about the fake cheese popcorn chemical coating. If you haven't heard the story, it's why I won't eat the stuff anymore. I got an excessive craving for it the day after I brought my newborn son home from the hospital 20 some years ago as I and his father were headed to a family Thanksgiving celebration. Two days later I discovered why this wasn't a good idea. It was just wrong. What came out of the baby. I was breastfeeding. Smelled and had the SAME COLOR as the cheese popcorn coating. It was truly disgusting. This set of chemicals had gone through TWO digestive tracks and stayed together. Wow. But that to me is more reassuring than the stuff in our food that DOESN'T.

That's the stuff I worry about and wonder what it's doing in my body. What cells is that garbage changing? What inadvertent effects is it having on my brain or central nervous system chemistry? How long is it being stored in my fat or muscle tissue? In my liver? Is it all being released in a flood when I diet? With some of the effects I've noticed just watching as people slimmed down, and the difference in a few generations between what was considered a "healthy" diet and what wasn't, I'm pretty sure that no matter the number of vegetables you eat nowadays and good grains, if they aren't fresh, non-GMO, and organic, your diet is probably worse than your great grandmother's...and she probably went to bed hungry a whole lot more often then you do.
from a pissed off goddess with poison in her food supply...

Clusters and others and the menopausal migraineur meets the puzzled goddess

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

Fugue state is an old term for that time in the migraine cycle that you are hyper aware that a migraine will happen, expect it, dread it if you want the truth, but can't look away any more than you can at a train wreck.

Well....that's if you're a migraineur who gets "classic" migraine as I used to. Before 30 and pregnancy, estrogen, progesterone, and now testosterone all have influenced various conditions and turned classic to cluster. (I've been wondering tongue in cheek for the last twenty two years if this wasn't just a cluster f@ck of a diagnosis on people's lives. And knew it was my black humor and early bent toward the military coming through.)


I've been doing a great deal more research myself lately since large studies are finally being done, and I'm becoming involved in chronic pain advocacy, because, this is my life. There isn't any changing it now. My new normal has been here and holding out dreams for magic pills is just getting in the way. So all health topics will pretty much be moving to my new blog The Menopausal Migraineur .

And yes, I do look like a vampire in the middle of a bad attack. LOL just HAD to prove it. This is even after a sunburn and hives.

from the puzzled goddess going to do her relaxation exercises. . .

Divorcing the Disease...

Some goddesses are puzzled by this...like me...
It's been a long time, some of you have heard the news from family members, though I've talked to very few people about it...these last months since Spring 2013 have been painful and traumatic and hurt filled for the whole family. The title here isn't a clever play on words, after over 22 years of marriage and raising two beautiful children, my husband and I are going our separate ways and have been working through separation and are in the process of divorce.


     Don't get me wrong in thinking I blame my various inherited disabilities and the associated levels of grinding pain  I'm living in to have been the sole, or maybe not even the main cause of our divorce. I seriously offered my husband a divorce for the first time when I realized just how far our lives would be from anything either of us had planned, and just how grim it was going to get to live with someone who was in constant agony, as if a dentist's drill were going  after 1 quadrant of their head 24 hours every day with no let up, while the ground glass feeling in all the joints on my extremities that had been my version of fibromyalgia and flaring was flared at the same time. It was pretty horrendous. If I didn't have a throbbing piercing pain stabbing from my eye back through my head in tune with my heartbeat like an ice pick was being hammered through my eye, I was feeling the back pain from multiple sports injuries or the grinding glass over raw hamburger torture that assaulted my ankles, knees, shoulders, elbows, and wrists. Rick and I didn't have to be told about gateway pain, we lived it. And I never lived very far from my syringes of migraine relief, message, and acupuncture in those first years after I had my kids and sent my body chemistry and our lives into purgatory.

  Rick and I both believed and believe in marriage though. 22 years is a statement in that. He was my best friend for all of those years and my biggest cheer leader, the person who supported me the most. He was also one of the people who needed the most from me that no matter how much I gave always needed more to feel loved. And for someone, me, who was lucky if I had three hours in a day that I could spend outside my bed, or the atmosphere of my home which I'm accustomed to, a husband needing reassurance that he's loved, children needing the same, a house needing to be at a level of clean that doesn't make my now additional lifelong medical conditions worse, and trying to squeeze out any alone time in the midst of all this didn't happen. I was being run into the ground further physically and emotionally. My doctors' had all hoped that menopause would make things better. It didn't.

The doctors just let me go back to medicines that had worked for a while in the past until my body builds up a tolerance. It's a pretty common thing to do, especially for preventative medicines. You hope you can come around in a few years and use them again when the tolerance might be down. I could. I got lucky.

Then I found out that time marches on. Arthritis has taken hold pretty strongly in my back and hands, where it used to just be muscle and tendon damage from old injuries and fibromyalgia...my thyroid which had been chemically burned out when I was younger and had Grave's Disease to protect my heart, was now under attack by my immune system, and I had to face that the auto immune's like my mother had died of, must run in families, like all the rest of it. Then the immune system went for my eye...those who follow this know that months of retinal cysts and inflammation finally led to a replacement lens and eye sight not quite up to par. I've been told that it will be 18 months at the outside before the lens in the other eye will need replacement.

All of this, here, now, takes so much energy. I hardly have energy to spare to not be selfish. It's taken me almost two years, and I'm still not quite all moved in and set up to live independently without one of my conditions kicking off and causing major problems. Everything has to be arranged just so. I can't even smell other peoples' perfume or dryer sheets without it setting me back for days. I wish I had a bubble to live in sometimes.

Marriages take two people working to make them thrive. Rick and I communicated, but we stopped being able to be or give the other what they needed. For some weird reason my kids keep trying to make me a saint in all this. I can't accept that. Even though it was fallout from some actions of Rick's that finally splintered the family, the problems were there and were things I've always tried to work on to make better. But in real life some things don't get better, some things just are and you can exhaust yourself trying to change it as much as you want but until you find the grace to accept what is you will continue to feel buried alive and burdened.


from a puzzled goddess taking stock and figuring it out...blessed be.

90% Used Books... something's got to go

...maybe some people?
Some goddesses are puzzled by this...like me...

It's been a long time...It isn't as if I don't have things to say. The world is still turning. I still have teenage children, I'm still married and I'm still facing health issues that have made my life one of challenges from the time I can open my eyes in the morning until I may close my eyes at night.

My daughter has started me on some new loves however.She has taken my old loves of jewelry making, working with metal and wire and beads and glass and pearls and reminded me of just how much I have always LOVED to make jewelry. So that has become something I can maybe concentrate on when the pain gets particularly excruciating so that I can try to block it out for a bit.

I'm also trying to slowly set up her site for her jewelry at: http://fireinspired.blogspot.com/p/kumihimo.html She and her dad are the main forces behind "Fire Inspired Creations."

I'm going to try something a little strange with the extra stuff I have hanging around here. At least 90% seems to be books, but there is the odd knick knack, video, or strange piece of vintage whatever that I may want to get rid of, ....so since quite a few of my books are 2nd hand and library or goodwill or other thrift store finds, that I normally searched long and hard for to fill the gaps in the series. I will be posting small blogs about the books and other stuff  I'm selling and selling it on a blog called, appropriately enough: "Mostly Used Books for Sale" http://puzzledbooks4sale.blogspot.com/ and I'll probably be putting references and info in our librarything listing at: http://www.librarything.com/catalog/sprowett/yourlibrary . My books aren't first editions or anything. And some aren't in great shape. I'll be honest about that when I list them. But some of them were darn hard to find, and still seem to be, and if others are like me, and just want to read the darned story, they won't care as much if the spine is cracked, or if it has some water damage or a bent cover, as long as it's readable. If they care about that, they can look for it at Amazon or elsewhere. Some of these books have traveled hard roads to libraries, goodwills, garage sales and then into my voracious hands. : ) They stood no chance.

After checking into Amazon, Alibris, and Ebay, I just didn't feel like spending that much to get rid of things that are old friends...I may have to do it eventually. But I'll try this stubborn way first. And I didn't want to do Craig's list because I didn't want people coming by, I'm disabled and getting more agoraphobic by the day. And these aren't Free so no FreeCycle. I'd like to trade them for books I haven't read, or need to complete my current authors, or even maybe some older movie or song cd/ or dvd's I'm interested in. I'll see how this goes.

I'm here, just trying to dig out from the 20 years of sedentary life and realize that I've most likely got at least 10, if not 20 more. :D The puzzled goddess wants to be occupied!

It's done so I can share a Midsummer Knight's Comic....?

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

Text for the Herald
Let it be known that We, Thorin, Dread Sable Lion, and Dagmaer, Fair
and Gracious, Sable Lioness have Created to the Rank and
Dignity of a Knight Our Trusty and Well Beloved,
Lourenço de Compostella and have made him the same on
account of his Chivalry and Prowess upon the field. Let all An
Tirian hearts rejoice as a new made knight and member of Our
peerage stands forth.
In witness of this day do we set our hand and seal on the  __________
day of August Anno Societatus 46.

The scroll design was done by HL Sannan the OneEyed of Hauksgarðr
Design based on the Galician  13th Century Manuscript Las Cantigas de Santa Maria Chansonnier
primarily elements from Codex E but elements from Codex F (the Florentine Codex) were  used as well as both were similar stylistically 

The reduction in size from the original 35X50cm or 14X20" was due to the size of hot press paper I had on hand.

 The color choices were based on manuscript color choices/schemes for borders and non-story elements
Other color choices based on reality and or arms of individuals involved. ;) M.Graham designer gouache was used for paint with colors being matched as closely as possible to those seen online in the Cantigas. Metals used were all sumi ink by yasutomo and were applied first and burnished.

This manuscript is considered by many to be one of the earliest forms of comic 'book' and as such, tells many 'stories' http://anthropro.blogspot.com/2010/11/medieval-comic-las-cantigas-de-santa.html
the story of this scroll is Lourenço's SCA journey to this point from the OP and his own words.

The first two frames are the AWW  July 2003 where he and the now Sir Godric ap Rhys (colors Sable and Or) held a bridge against an overwhelming number of opponents from the West. Lourenço was known as n and was awarded the Fury of the Lion for their courageous last stand at the bridge.

I messed up the order of the frames a bit when I was doing my cartoon under-drawing for this...but light boxes are wonderful things...

Next Ejulfbjorn makes the journey to 3 Mountains from his home in Glyn Dwfn, where he learned under the tutelage of Duke Sir James Greyhelm (the blue dragon wings on the boat to guide him and the 2 silver spears and the silver and blue shield in the viking boat) and Sir William Brennan (the black and red shield in the boat). Lourenço's own axe and shield are in the boat as well. Everybody I consulted liked the waves under these boats that were a very dark indigo with white swirls. But, of course, as Ejulfbjorn, was NORSE when he first got to 3 Mountains before his personna change, I HAD to have him arrive in a Norse ship with the proper warlike accoutrements from the people he had been learning from.

Next Lourenço is seen as his incarnation as a Stormgod, the Barony of Stromgard's defender, (with the white horse of his knight William Brennan in the background.) he is shown in the Eric in his own armor of his colors with his inspiration watching. In my cartoon above, this is in the second square. In the final it is in the 4th square. On Facebook I posted the pictures Lourenço sent me of his armor, himself, his lady and his banner so I had a chance of making some of it match his actual stuff. I checked the armorial for the James Greyhelm listing and Lourenço sent me the information on this first knight, William Brennan, so that his horse, and colors, could be added to the scenes. He sent me the link on Godric ap Rhys as well so I could add his colors to the bridge battle.

Checking the OP, I discovered when he was awarded the King's Favor and his AoA and so could try my hand at small likenesses of Tiernan and Miranda. They aren't great, but hopefully aren't insulting and they get the spirit of the point across. The last panels are Lourenço after he received his King's Favor from King Tiernan, also receiving his Award of Arms from King Tiernan and Queen Miranda.

And in the final panel, Lourenço is put on vigil and is seen in a vigil chapel with his head bare and his weapons outside the door. The shield division was taken from Lourenço's device that is in submission, as are the colors of the surcoat. The surcoat style is from the manuscript. The wolves and bears at the box crossings are from his proposed arms. The banner on the historated initial is similar to one he carries in reality as a war banner.

I sent a few links with the information about the scroll so if the recipient was interested he could do more research:  http://www.edilan.es/hojas/0002e.htm
http://www.library.arizona.edu/exhibits/illuman/12_08.html

And I added a few cautions from scribes I've learned over the last few months. :D

This scroll is hot pressed paper and a water soluble paint with waterproof ink, 

BUT please,

realize  over 20 hours of research went into its creation, 

                       plus 6 hours of calligraphy

                       plus 15 hours of underdrawing

                    then an additional 70 hours of illumination (painting)

That is over a hundred hours of an artisan's time. THIS artisan's time...Whether you like, hate or are indifferent to the product, 

please don't:

fold, roll, or sit on it where other scribes, or I, can see you do it....it discourages us all, and makes us all feel unappreciated

sweat, drip, cry, or let rain hit the paint. It will smear and ruin the painting and all those hours will be for naught.

Please don't store it on a dashboard in the sun, the wax on the seal will melt...but it will ride home there fairly well. ;D

Please do: hold it by its edges, keep in an envelop, and if you don't want to frame it...give it to your mother....maybe she'll want to frame it? 

Nothing made me want to wince more than seeing original works of art thumbtacked to a wall, or folded and slid under the recipient's rear for safe keeping.

Congratulations Sir Knight, and I hope you enjoy,

Lady Sannan the OneEyed of Hauksgarðr

I'd already managed to bung it up enough just because of my constant fight with depth perception while I was working on it. Just 2 more weeks would have been a luxury. I'm feeling whiny. My eyes are a constant burn and ache now. So bad I can hardly sleep. And my left arm, the one I haven't been able to afford the surgery on yet, was holding my ink bottle and managed to spasm into me juggling the ink bottle right over the top of the scroll in the last two days of production. Not just once, but twice.

I know it's just that I take on commissions as if I'm not disabled anymore and then act like I'm not and my body rebels. It's rebelling now. The pain hasn't climbed down the scale far enough for me to really sleep since I finished.



And here, my covering paper slipped while I was doing the flourishing Batarde Initials...The paper that is SUPPOSED to protect from stuff like this...and caused this by slipping into wet paint and carrying it into the margin. That little red blotch. There were a few other blotches by the calligraphy, but I expect those, cause I'm not so great at calligraphy. So one of these days I'll have a perfect product and have to find something else to bitch about. ;D

 I know better. I just felt so honored to be asked. I don't seem to get asked to do things very often so I hate to say no. But I need to learn that my body can't live up to these kinds of demands. My eye gave out 2 days before the scroll finished and so I had no depth perception trying to finish. Luckily the main calligraphy was done or I would have been toast.  As it was, the hand spasms caused some bobbles that wouldn't have happened it I hadn't been so tired that I had to push it. If I hadn't had to wait so many days up front to start. If I'd known even 2 weeks sooner it would have been much cleaner all around and I would have been much happier.

This has the ugly black ink bobble at the lower corner.

This is the same spot. It didn't clean up that well. Hopefully it will be matted and framed.

The worst of the bobbles he probably will never notice unless he, or someone else looks. They will be under a frame or matting edge. Others, I will always notice, I'm a scribe....gee, I will always wish I just would have had time to do that....

In this one my pen came down into the ship caption from above.

The pen marks, the ink, the paint..the bobbles, it's all part of it and there are ways to fix almost all of it so I didn't have to start over luckily, because I didn't have the almost 100 hours of time to devote to the project again.

The red splotch cleaned up fairly well.

I got thinking about it....how many armorers devote 100 hours or more to how many suits of armor they build? How often?  I know many scribes who put in this amount of time in research and honing their skills regularly. Others who don't as much, who just trace and paint, not as much researching into the era of the client, but wow....we're insane....   Maybe some of it is I just don't paint or draw that fast. ;D

My FB portfolio
My FB charters- medieval illumination I have done on other's designs

from an insanely puzzled goddess

Next time I agree to this short of a timeline....shoot me....

Some goddesses are puzzled by this...like me... I always let the helium float that hand up and say yes. I know better. Dayam. I knew better when I did the 2 charters for Stormgods. It burned me out for weeks. My disabilities and helium hand do NOT mix. There's more than one reason I had to stay home from Stormgods.

I knew better this time. But I'd promised Eleanor a charter for this reign and it was ALMOST done...not quite...so the guilt hit and I figured, (and Kerryk said, "you've got 4 weeks"). So I said yes to my first Kingdom commission scroll. The knight was put on vigil at Stormgods and was to be made a peer at Sport of Kings.

I said yes.  Then I was a dumb ass and double checked Kerryk and the calendar and discovered that there was less than 3 weeks to get it done....oh, shit. So I quickly read through all those notes I had from all those classes where the experienced scribes tell you what to do and who to contact. And I sent the emails out and waited for responses....and waited.

Checked the OP and the armorial and didn't see any arms so I talked to the Wrangler, but the candidate seemed to think it would be just fine to use his arms since they were in submission and he'd been told they were sure to pass and he had received a "letter" about his name.

2 weeks later I got the final word after contacting and not hearing from Lion's Blood. Even though the Scribal procedures call for scribes to get wording approved through Lion's Blood...Lion's Blood doesn't want to see it, and since Lion's Blood needs to sign all blazons and emblazons they do NOT want any scrolls created with out PASSED devices or names or they WON'T sign it, PERIOD. I didn't get the courtesy of this response, but at least Sable Sable did...It should be fun the NEXT time somebody tries to actually follow the scribal procedures as they are written in the scribes manual...hmm....guess not too many people do....or maybe too many people are and Lion's Blood is getting inundated. (I never checked back emails on the scribal list to see that THIS Lion's Blood didn't want to see scroll text. LOL So I could have gotten four days of that time back for myself if I'd just remembered that email going out awhile back, but I'm too forgetful, I always go back to the manual.)

Anyway, requests for info from other sources besides the individual himself were woefully lacking in information and uninformative. I was glad the people weren't talking about me. I got essentially "He's a good fighter, has won this award and wears armor this color." Wow....somebody told me he was really tall and he was a really sweet guy. Not a great deal to go on when you are trying to personalize something to make a memory for someone to last a lifetime. Luckily his Wrangler knew more, and since it wasn't a surprise, his Wrangler put him in contact with me and I could get some info out of him to add to the mix.

In a few days I'll post some pix of the scroll and how it went. Design inspirations, and all that so people can follow the thought process and see what a pain it is and how many mistakes are made when you can't take breaks when you are tired. Or when your one working eye is over strained and you are losing your depth perception. (I really am earning the OneEyed title lately!)

But it will have to wait until it's done....and after it's been awarded....at Sport of Kings...which I won't get to see. Hopefully, someone will get a picture.
from a puzzled and tired goddess

The hands are it.

Some goddesses are puzzled by this...like me...
Really. Luckily the black plague only visited for a few weeks and left awhile back.

If you are squeamish about stuff, you might want to stop reading now. This is a gross pictures alert. But truly, it was like a train wreck that got worse every day. I couldn't hold anything, and I couldn't stop poking at it or taking pictures.

The first few days the itching and "hives" or whatever you want to call the reaction weren't too bad....then it got worse. I've had this before when I was taking narcotics long-term, which I am now. It's why I take benadryl with the narcotics, to cut down on the hystamine reactions. I know when there is too much morphine built up in my system because the small blisters will start to form under my skin in my hands and fingers and itch like crazy.

I end up with larger almost pimple like blisters elsewhere, but my hands are awful. The blisters will get so big, from little pin heads to where they grow together and make my fingers like overcooked and water logged sausages.

I've always just popped the edge of the big blisters and wrapped the fingers up and tried to keep them from getting to where I can't use them. WRONG thing to do as I was told by MULTIPLE medical practitioners.

Well, this reaction was MUCH worse than usual. It started out like normal. And progressed like normal.  I stopped my morphine, thinking it was the culprit. It kept getting worse. I stopped the other new medication I had just increased the dose on and checked with the pharmacy...it would take at least a week for it to clear my system. I took the new flea collars off the cats and dog as well. Quadrupled my benadryl and even tried it topically. It just kept getting worse.

That is NOT a shadow, it's a blood blister and the color of the skin.

Eventually, about the time that the entire finger sized blood blisters made it look like I had the black plague, that was not a joke, and I had a red line climbing up the OUTSIDE of my arm which was strange. It looked like a blood poisoning line, crawled up my arm like a blood poisoning line, but I've had blood poisoning in the past and it was on the inside of the arm...hmmm. I marked the spots and watched it progress up my arm and took some Aleve for the 103 degree fever.  The fever didn't drop below 101 within the next 4 hours while the line went up my arm another 5 inches and I waited for my husband to come back from the meeting he was at in Portland.

I checked the emails I had been exchanging with my doctor's office and discovered that they wanted me to go into an ER or Urgent Care if I broke a fever...ooops...I was starting to think it might be a plan.

I don't think the ER doctor knew whether to be disgusted or intrigued. He did tell me that in a possible drug reaction like mine that I COULD react like that all OVER my body and have swollen, blistered skin that would squirt liquid every time it was touched and break and oh, gross....just about what my hands had been doing for days...all OVER....yuckies....

This was my neck

My mistake had been opening the skin. The blister here to the right on the thumb? It's infected. And so is the on under the ring finger. The blood blisters are caused by all the pressure the liquid filled skin puts on the underlying skin as it swells. I was "just like a burn victim," as the doctor said. Believe me, I felt like it!

It was bad enough that my neck, face and chin had gotten into the act...Even my eyes were involved.

The ER doctor wrote orders that I was to go to OHSU and get an URGENT dermatology appointment and have the skin biopsied to make sure there was nothing more dangerous happening there. He even called the orders to my internist, who got the orders to the Dermatology department.  This was on Wednesday night/morning around 4 am.  I called my internist the next day and was told the "urgent referral" had been put through. I then called dermatology, this is Thursday mind you, and was told that the earliest "urgent" appointment I could get was 2 weeks out.  I LMAO and told the receptionist no thank you, but by that time I would have either molted, died of the plague, or needed to go back to ER, or been healed enough that what ER would have wanted the dermatologist to see would be gone. Her response to my snippiness was her own snippiness...I can't give you urgent appointments I don't have. LOL

So then the next afternoon, Friday, after I have left an email for my doctor, explaining that I'll keep the shedding skin for them since the dermatogist's receptionist considers 2 weeks urgent enough and that I'm not going to bother to waste my time or money when by that time most of the symptoms will have gone under ground and be invisible or so bad I'll be back in ER long beforehand....well...Friday I get a call from Dermatology ....a different receptionist....saying my urgent referral has been called over and can I come in that afternoon? LOL this is at 3:30 when I live 45 minutes plus away from OHSU. Which is the reason I didn't go to their ER in the first place. I tried, they said if I could make it by 4:15PM they would see me. With traffic I couldn't do it, but I DID get to see them the next Monday at 8:15am...hmmm....guess there IS such a thing as an URGENT appointment after all, huh? And the Dermatologist agreed that I should have seen him the week before, but that the first he had heard of the problem was on Friday...hmmm strange....

This is after a week of treatment by the doctor.

Then the skin was sloughing and hurting, just like a burn victim, but at least I felt like I was healing.

All parties then agreed that the biopsy wasn't really necessary. That it probably was a drug reaction to an increase in effexor and that my long term narcotics could be re-started and I should continue to take the benadryl and the tagamet the ER doc had started me on. Weirdly enough, tagamet has something in it that is a H2 Histamine blocker and was stopping a great deal more of the itching than even the benadryl. The dermatologist also gave me some ointment.

The upshot is no antidepressants whatsoever for the last month and a half and it has been a nightmare because I tried my old ones in the middle of this and they seemed to increase the itching.

Though as of this week, the first of August, I put the flea collar back on Mystique and MY HANDS EXPLODED within 3 days and the pinky on my right hand even went to blood blisters....so...off with the flea collar and back to the dermatologist's ointment, and maybe I can go back to the antidepressants that were working? We'll see...

from a chronically depressed goddess who is ALWAYS puzzled

Pain full thoughts...

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

I've had low blood sugar, migraines, colitus, acid reflux, back problems, and high blood pressure since my mid teens. Fibro in my late teens. Chronic fatigue, hyperthyroid, thoracic outlet, and carpal tunnel in both hands in my late twenties. I got pregnant and my migraines went to clusters and then daily clusters. Then they gave me drugs that made me obese. I developed high cholesterol, hypothyroid, high spinal pressure. Now finally diabetes, Hashimoto's thyroiditis, and uveitus.

Now by the luck of the draw the pain isn't upping my blood pressure, it's lowering it.  Which I didn'..t know could happen. So now if I bend over at the wrong time or move too fast I pass out. Orthostatic Hypotention...? WTF?  Sounds fun, huh? Wee.... yes, that's sarcastic. One more weird ass thing to explain to people that doesn't kill me,  or put me in more blinding pain than I've been for the past 17 years, but one more time my body triumphs over my mind.


I watch others who I know are in so much pain, and I try not to make it a contest about pain. Just getting through each day is a miracle, so how can pain become a contest? But when you so constantly feel like you have failed at all life has thrown at you, it's hard not to see it as one more in a long string of things you've failed at...pain tolerance....you just don't measure up there either....no wonder you just can't take any more...

Knowing that I'm going back to biting, grinding, soul numbing pain that never ends, of the sort that if you were an animal and could bite a limb off to it stop you would and that there is no medicine or trick or activity or meditation or THING that I can do or NOT DO in my life to stop it from coming back to me scares the hell out of me. The medication is not as effective as it was...soon it won't be effective at all...again

The pain doctor, and the psychologist she sent me to, think I'm giving up, and that I have a negative outlook. I don't think that's the case, or I would have swallowed a gun long ago. I just don't think either one of them intimately knows pain. Most of the people who try to regulate it I don't think have ever known or lived with much real pain in their lives or they wouldn't really give a rat's ass about the small percentage of people who abuse medication and would have more compassion for those who have to live in the pain. If crawling into a bottle or a bottle of pills would give me back some of my cognitive function or reasoning powers around the pain, I'd do it in a heartbeat. Hell, I'd do it if only to get a teensy break from unrelenting agony occasionally.

But I'm not dying and so I have to live on in unrelenting agony because my government wants to be my mommy and knows what's best for my body...even better than my doctors...and they've known so well what is best so far....

yeah...from the sometimes goddess of sarcasm and pain

don't take my energy...

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

I am, as those overly PC people put it, "differently-abled." I've railed against it, against my genetics, against gods, and all involved.

Most people don't get it because it's invisible. Over the years I've commiserated with others in similar situations because they too, understand...that's why I'm frustrated and get pissed off when they blithely steal my family's spoons. Yes, I consider it a theft. Because otherwise I was in an untenable situation and would look bad...

So it was that I use energy I and my family didn't have to waste on somebody that KNOWS how little we have because they are in the same boat, or look like awful shirkers who leave these poor people stranded alone to pack up all by themselves.

It is worse because my husband has now joined the ranks of the uncontrolled diabetics again (no insurance), with other problems that go with it like high cholesterol and high blood pressure and his sleep apnea. He's losing weight. But somewhere recently he lost his backpack that had his diabetic blood sugar monitor in it, and half of his medicines and of course we can't afford to replace it without insurance. A doctor visit alone to our doctor is well over $200, but it's getting critical.

So I've been rationing his energy, like I ration mine, like I ration that of the rest of my family...others think of it as how many spoons they have to get through a day. It's a good analogy to get the point across. Your energy is finite and people who have an energy reserve don't get that...but people who are disabled themselves SHOULD!


I've had to tailor my family's life to our reality. It used to be what do you want mommy to do, this school thing with you, or a movie with the family over the weekend? A family night? or some one on one time? It was always mommy and always an either/or. Now it's daddy as well, or both.


I ration my energy day to day. I ration my husband's energy. I ration my family's energy.


I even explain to people that we make choices between what we can do and what we can't based on the disabilities and amount of energy it takes to deal with it.


With small children and disabilities we found we couldn't event. We especially couldn't autocrat as we loved to do. I stopped going to most events and my husband went alone to some of them. I stopped cooking at events. We stopped putting up an elaborate period camp. All of our activities got rationed. Saying "no" became a hated skill I had to learn for my sanity and my family's ultimate survival.

We went to few events, even fewer activities because my disabilities made daily life a chore and just living it to raise children took all my energy.

Now my children are old enough to be a help. We are learning how to streamline our SCA lives to sometimes be able to still be able to afford the energy it takes to go to and sometimes even to run events, but I need my entire family's energy to do it for us all to get there and we plan our vacations from the everyday grind of pain and "can't do thats" accordingly. We all pitch in to make it work for our family.


Now, there is a down side that I have found with our love of our new group. My husband hasn't learned the ability to say no, and I find myself feeling responsible for people who are availing themselves of our too finite family energy reserves so that we are left with less than nothing when we return home. It will really mean fewer events for us, that's the bottom line.

I can't allow my husband, who is our only almost able-bodied bread winner at this point, to cripple himself like this for multiple days on our return from what is supposed to be a "fun" event. As a family, we can't afford it. Individually, he can't afford it, health-wise.


I can't afford it, selfishly, when he is my only support for transport, and the only support for transport for his disabled mother as well.

Don't get me wrong. We had so much fun with our friends at this last event, but we knew our limitations, and the limitations of our conditions and didn't even do our normal volunteering. My husband didn't fight; crap, he didn't even marshal. That should have clued people in to just how messed up he was. He went to bed just after dark on Sunday. This, from the man who like the night owl he is, normally helps me greet my pain filled dawn.

He's only like this when his diabetes is messed up like it was this last weekend and the injuries are stacking up from the weather and the packing. I doubled my meds. I'm not supposed to, but I can't pack otherwise, and I was relieved it only took us about 4 hours to pack our own stuff up. We woke up and immediately got to it like we normally do, all of our family pitching in and doing what we can. We even ate as we packed and just got it done. I was thankful to the bit of help we got to fold up the one tent and tote the couple of heavy things I can't lift. It was all of about 10 minutes to help us finish up or so I would guess. I probably made it longer trying to get in the way and bend over myself, but for some reason people kept being concerned I'd faint on them or some stupid sh*t like that. ;D (Thanks Aislin for the assist folding the tent!)

I had to think long and hard why I've been so upset the last few days while we've been recovering and pretty much bed bound. And I think it was so hard because the next 2 hours was spent packing up a camp with only half the people who had shared it helping after they had made an INCREDIBLY slow start to their day and it had put them way behind everybody else. I found it hard to not feel resentment as the kids all sat in the car and Mom in that camp did most of the work, disabled as she is.

It bothered me most because, while I don't mind helping, I expect EVERYONE to do what little bit they can if I am going to be using up energy my family doesn't have to spare, and I felt like my husband and I and a few others were paying the toll so that the disabled gentleman in that camp could overuse his own energy and enjoy himself that weekend. We paid HIS price. My husband even warned him not to pack so much and was ignored and we still paid his price. As well as the price for the non-disabled people riding with him who could have been helping but sat in the car instead for various reasons. They may have been valid reasons beyond getting food; I don't know. I just know that energy was fading fast that would have been conserved if there had been more help and more fellow feeling.

Courtesy requires that people not be able to say things when they are so angry they are being abused and they feel they are being taken advantage of. That is wrong. It is discourteous to us all to take advantage of us by relying on our courtesy and goodwill to do your work.

A two hour drive home took 5 hours because of the stops we had to make to calm the spasms of pain my husband was having ,and I was in no shape to drive because I'd had to double my meds to "help" pack up when I went beyond my limits. I felt absolutely helpless. I didn't have anything I could medicate him with and I was too medicated to drive. All we could do was wait for the muscle spasms in the back and shoulder to lessen enough for him to drive again.

Then he had to race the clock to get home to help a disabled mother try to get a battery for her car working so she could see a doctor. He ended up back out on the road, muscle spasms and all.

So...I need to get this said. I may be seen as the wicked witch of the west or of the local area. But, I did my volunteering in the background and what was within my energy to do at the event, or would have been, based on what my family packed and what we knew we had to do.

I've had 2 eye surgeries in the last 4 months and have been fighting medication changes that are swinging my blood pressure and blood sugar up and down, and I'm lucky if I can bend over without fainting. I make us pack only what we need. My husband didn't volunteer to do the things he loved because he hurt himself helping people a few days before the event and knew that packing up and slogging in the mud would be too much for our family energy to absorb.

As adults we make those decisions daily, and yes, we made the decision to help the pople we did, because their being left behind to do it on their own would have reflected badly on our own group and ultimately, on us. So we made the choice not to look like slackers who had no conscience.

But they, as well, are adults, who have been disabled a long time. Long enough that they should know their energy limits and not ask others to give them spoons. Aislin doesn't have many spoons to spare. I don't have them and my husband doesn't have them to give. We were put in a position to be made to look bad if we didn't and that's what made me upset.


Many people in our group are disabled. We seem to have an overabundance of "differently-abled" who need to steward their energy wisely and, as such, we need to help each other as a community, but we need to NOT count on abusing that help. Because those of us that help are giving up our energy and spoons and future days of being able to take moms to hospitals and go with kids to events at their schools to you too! These are things that have been missed...


I recognize it when I have to ask for help, and I sure don't expect to receive it. I am amazed and humbled by the willingness of our members who can give of their help and do, but expecting the help is an abuse that will see the help drying up and blowing away for everyone.

Why am I cowardly bitching here instead of in an open forum where I can be answered face-to-face, or in a one-on-one meeting where I can address the problem diplomatically with the major individuals involved?

Mainly because of my old nemesis, disability. I can't string sentences together and when I have an issue to address when I am upset the ability regresses even further. My IQ drops by 20 to 50 points and I spend many minutes fighting the fog and being frustrated and losing the point of the whole exercise, and by then, so has the person I'm trying to confront. So I have found that writing, with the ability to stretch it out, find the right word, and ask for the person's feedback, can actually facilitate one-on-one communication for me. It is still just as hard for me to confront someone as it ever has been. I still need to get my courage up so I'm not walked over and then I need to find the words so that I can hope they'll understand my feelings, and not just blow it off as unimportant. Because if I sat down and took the time to draft it out and write, it was majorly important to the future of that relationship.

from the goddess who has been hibernating with her god for 2 days recovering...

The Spoon Theory written by Christine Miserandino

For those who don't quite 'get it' when I talk about managing my energy during a day, or only having so much or being out of it....or what it's like to live disabled. This is the best analogy I have EVER read.


The Spoon Theory written by Christine Miserandino

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Eye strain...and growing tolerant to modern meds

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

I'm getting tired of posting these updates...and I'm sure others are tired of reading them. But it beats having to tell you all ad nauseum in person all the health woes of the woefully insane who has Hashimoto's (Fibromyalgia, chronic migraines, diabetes, arthritis, and, and,....bleck).

For those who haven't looked it up yet, Hashimoto's Thyroiditis is another cute imune system disorder that doctors can't really treat. It normally starts with attacking your thyroid, thus the name, but when it's under control in the thyroid arena, it can chose other organs of your body to attack, just like lupus and sarcoidosis are known to do.

Some of the people that I know that have it, are theorizing that mine chose my left eye to attack.

It's as good a theory as any other, since this is exactly the theory the doctors came up with...they were just trying to assign sarcoidosis to it...it seems that the doctors at Casey Eye haven't met Hashimoto's yet. Doctor Dreamy meet Hashimoto's Thryroiditis, Hashimoto's meet Dr. Dreamy. otherwise known as an escapee from the cast of "Grey's Anatomy." (I swear to God it is true! LOL.) I think the doctors up on the hill need to pass a casting call as well as an IQ test and medical school in order to work there. Hmmm! I wonder how that's included in the job anouncement?

But, back to the serious stuff of updates...the vision is at a blurry 20/60 now with my corrective lenses and isn't going to get much better. I can see to do close work illumination and such without my glasses much better than with them. It seems pretty solid that I will end up having the laser outpatient surgery to correct the rest of the blurry vision. I still have a seriously weak eyelid on that side and the eye muscles get VERY sore very quickly with use, but I am trying to push them in order to get the peripheral vision back.

Other than the eye, the meds for the cluster migraines have pretty well stopped working on a daily basis so I am back to most days being at a 8 or 9 on a pain scale. It will probably take me a while to adjust again to that level of pain and the associated lack of conscentration and cognitive function it allows me. I'm trying to avoid the snappiness and grouchies that I know go with the chronic pain in the head.

Been there, done that, I own a closet and dresser full of those tee shirts. It just gets tiring not to be able to think or form a sentence and to have the people around you talk over you and complete everything you say.

One bright spot on this~! with the migraines back I can't really feel the arthritis in my back and the joint degeneration in my neck. LOL

So unless we go 4 wheeling in the woods, or I'm sleeping too long my head is out screaming my spine. The silver lining to every cloud. I still need the meds to get around when my head drops below a 7 or so...cuz the back pain is above that...gee, doesn't THAT make me a fun date at Christmas? LOL And to think my daughter is cringing because she's looking into a possible future...

Love and kisses and blessing to you all from the poster child and goddess of
it doesn't kill you it just makes you wish you were dead

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

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...

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

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