alysten: (Default)
2015-05-31 11:24 pm

Life with CMT

I have been having a lot of ankle pain and a lot of tendon pain. This is just another example of CMT throwing my feet out of balance. And tomorrow I get to learn what they are going to do about things.Pics behind cut.
Read more... )
alysten: (Default)
2015-01-20 01:11 pm

My letter to SCA BoD

I am posting here because I can put things under a cut. This will allow those of you that do not want to read my letter can skip over it. I've made it public, so anyone can read it.

I know this wont be popular, but Im ok with that.

~Alesone

Read more... )
alysten: (Default)
2013-11-09 05:27 pm

Yule menu

It's ambitious, but doable. I've got some great help coming.There are a couple of items that may change, depending on availability and price. There was some reconfiguring of the service of items, if only because I cannot front load that much protein onto people.

Menu below cut... )

alysten: (PandaWhale)
2013-06-04 01:07 pm

Me and shoes

I figure I should just explain why shoes and I don't get along. Not that anyone should care, but I will explain anyway.

I have a neuromuscular disease, called CMT (Charcot-Marie-Tooth).  It is the most common of the "rare diseases" which effect motor and sensory function, 125,000 cases in the US. It is caused by the demyelization of the nerves. Since the myelin sheath is what conducts the signals, the nerve can no longer send the correct signals to the muscles. And the nerves that stimulate movement are the most severely effected.  It starts in the feet and legs, and can progress into the hands and arms. There is no cure. And I have had it all of my life.

My disease has progressed to the point where it effects my feet, legs, hands and sometimes my lower arms.  I have had 5 corrective foot surgeries, which have taken almost 4 years to recover from. I have gained stability and balance and a bit more time.  My bones in my foot had elongated to the point where I was going to start getting random stress fractures. All of my toes are fused straight. I have 2 screws in each foot.  I have had 12 different tendons lengthened.  I have had most of my rt. planar fascia removed.

I forget how to walk.  Walking is not an automatic thing for me. I have to remember to pick my feet up off the ground and put them down in front of me.  Very much like Winter Warlock in "santa claus is coming to town", I put one foot in front of the other...  If I am very tired, and I have taken my drugs, you may notice, that toddle like a panda. You will probably also see my slap my foot down as I step and that I start walking with a pronounced "V".

If I am at an SCA event, you will see my shoes. Either I have my skirts hiked up, or the cut of the gown is such that it comes up to my ankle. It is a rare dress that goes all the way to the ground and usually I will wear a hoop so that I have free foot movement.  I can bow to the crown, but I cannot kneel. I am just beginning to figure out how to get up off the ground. It usually requires a solid surface and non-skirt restricted movement. And it is anything but graceful. I mean no disrespect, but will not be kneeling before any crowns anytime soon.

This brings me to shoes. My SCA shoes are not period and I don't care. I cannot wear those yet. I can barely wear normal shoes. I have 2 pair of shoes I can wear for more than 8 hours and they are skateboarding sneakers (specifically vans). And I am finding I have a devil of a time trying to find shoes that will work.

Normal shoes have to pass a "bend test".  This means if you take the heel and toe, and bend them up, they have to have little to no bend in them. The soles need to be stiff and relatively flat. I cannot wear anything greater than an 1" heel. I need a wider than average toe box, but not a wide shoe. If a shoe is too wide, then my toes slide forward into the toe box. I have five "funny bones" at the end of each foot (each toe is fused straight). Imagine hitting your funny bone all day long, just from walking. Now multiply it by 10. Straps cannot cut across the 6" scar line across the top of each foot. And cannot push the right foot flat, as that will hit the 5" scar across the sole. Mary Jane shoes, with the cutouts to the toe, cannot be cut too far down the foot, or it puts pressure across the scar lines on the top of each toe. A shoe must have a wide enough mouth for me to bend my foot into.  My toes don't flex to make it into the shoe.

That is the short list. Every person's journey with CMT is different. My doctor knew what he was looking for, as he had treated my mother. I grew up knowing what I had. I also had a great support system, who always pushed me to do my best. I try to not let CMT stop me from anything I want to do. I may have a hard time opening a jar or working a zipper, but that never stops me from giving it a go. I can be stubborn. I never want to admit that I have a handicap, that I am somehow less than anyone else.  The drugs help, moving helps, and a bit of stubborn helps.

For a visual understanding here is a pic of what exactly they did to each foot, taken 1 week after they removed 1 pin in the big toe.

Click for pic. Or dont to skip. )
alysten: (PandaWhale)
2013-05-24 12:54 pm

Puzzling out the tross

I started off this year with wanting to do a tour of the HRE. I started in Bavaria, because I had material that matched a portrait. And people have been after me to do something based on an actual painting. Now that we have that out of the way, I want to do more interesting clothing. I want to work on a couple of lower class, tross outfits. Not the Saxon dresses folks seem to keep wanting to pass off as tross. I am looking for the folks with the baskets and the daggers. I am trying to de-upper class, cause you can't work in the pretty stuff.

I've got several different images of working wear that I really like:

Pics below cut )


I am especially interested in whatever the white hood thing is. And I am fascinated by the short socks. I like how simple some of these clothes are. And I really love the full aprons. I have one that I made last year, and it is by far my most favorite. And it is in a pic that is not of a birthing scene.I was hoping for more sleveless options (rather than attached to the over dress). I am more likely to push up my sleeves while working.  The fitted sleeves make it difficult to do that.

The conundrum is the mix and match of styles. I can see the various regional groups. Would it really matter what the women were wearing? Or would they be more reflective of the region they were from.

alysten: (PandaWhale)
2013-05-14 05:16 pm

Lists

I make lists so I don't loose stuff. I've told my self I cannot play with the new felting needle, roving and hat form until I've cleared my stack, blogged the backlog of projects and completed investiture feast. My external hard drive crashed and I am trying to rebuild my lists, from memory. If you are suppose to be getting something and do not see your name, let me know.

Blog updatesRead more... )

GarmentsRead more... )

Investiture feast menuRead more... )
alysten: (Cook)
2012-11-12 10:53 pm

Recipe Inspiration

In doing some link surfing for alphafemale1, I stumbled across an early pumpkin pie recipe. I may have to make this. I will be using the butter substitution for panch and udder. Though suet may have potential, if it can be found.

To make a Tart of Pompeons.
Take Pompeons and make them cleane and grate them as you doe Cheese, and boile them a little in broth and milk, then take as much Cheese as aforesaid, adde to it also a little old Cheese, take also a pound of the panch [paunch] of a Hogge, or a Cowes Udder well sodden [boiled] and chopped small, and if you will you may use Butter instead of those two things aforesaid, or Suet, adding to it halfe a pound of Sugar, a little Saffron and Sinamon with a quart of milk, and Egges, as need requireth. And when you thinke the Pompeons are sodden, take them up and straine them, and colour it with Saffron, then make a crust of past under it, put it in a pan, and make a soft fire both under and over it, and being half baked, cover it with Wafers or such like stuffe instead of an upper crust, and being thorow baked, straw it with Sugar and Rosewater.1598 English translation, grandly entitled Epulario, Or, The Italian Banquet; Wherein is shewed the maner how to dresse and prepare all kind of Flesh, Foules, or Fishes. As also how to make Sauces, Tartes, Pies, &c. After the Manner of all Countries. Translated out of the Italian into English..
alysten: (Default)
2012-11-12 05:14 pm

All clothing design, all the time

And it's not even Pennsic. I have a couple of things that I am designing for Bhakail Investiture in June.  They involve appliques and gilt and heraldic lizards. I am making an elevation dress for 12th night.  I want to make myself a new gown for 12th night.  And then there is the clearing of the stack.

Now that my feet can handle sewing again, it is time to completely clear the stack.  There isn't too much on it at the moment, but I need to get the rest of the cloaks done and out the door. I've been working on designs. And it feels good to get all the ideas out of my head and onto paper. And I've really been enjoying the design phase.

Because the subtlety phase is coming. I have 3-4 in the first 1/2 of the year.  I need to get those designs out of my brain soon.

Because the menu design phase is also coming.

This is an exciting time to be in my brain. Hopefully I can actually build what's in there.

alysten: (Feast)
2012-10-03 06:48 pm

Riverwar recap

Long day was long.  Amazing kitchen crew was amazing. Feast went out later than expected, but not because we werent ready. People left full.  Kids tried pretty much everything. Got to meet some amazing kids. Slice open my thumb (pretty well in fact) and Dr. Scott patched me up with super glue and a band aid. Also amazing clean up crew was amazing.

And then there was the OOK Peer that was a douche....
Read more... )

Everything is a learning experience.  Even rude OOK peers.  Small girl child Marin... her opinion and the opinion of the rest of the children at dinner matter more. Maybe they will remember that period food is tasty, and be willing to try it again in the future.  Maybe they will want to help out in a kitchen someday.  But they... they are the future of our society. And I got to play a small part in making something "awesome" in their world.
alysten: (ToeCozy)
2012-09-21 08:14 pm

Feet update

Itchy issues: Having the all the external stitches out has helped with the itching. Round 2 of steri-strips is having the same reaction as round 1, but this time I have more powerful drugs. And the strips are suppose to stay on about 2 weeks or when they start to fall off.  But I am certain, when they fall off was not suppose to be last night.  The nice Resident Redshirt (tm)*, Jim put them on while the spray was still wet. Will be trying butterfly closures later tonight.

Walk-a-bout: Walking is seriously over-rated. I am back up to pain med every 4 hours, rather than the every 6-8 I was at yesterday.  Holy flaming sheep, my foot hurts, hanging around a 7-8 on the pain scale. I am hoping to by next weekend for RW.  I am alternating between walking and scootering. Doc says don't rush or push it, as my foot is still angry from all of the reactions it was having. So I am actually not pushing it.  I couldn't if I wanted to really.   I am suppose to be wearing a normal shoe, but swelling is pretty bad and there is no way I am getting my foot into a normal shoe yet. I tired.  Had it on for all of 2 seconds before I started toddlering "get it off, get it off" and flinging the offending shoe in some direction ( i still havent found it yet). 

Part of the interestingness is my foot mechanics.  Removing most of the fascia, removes most of the arch.  And they did put some sort of bio-meshy artificial arch in the place where my fascia used to be, it still isnt a fascia. And tendons dont grow back.   So when I walk, there is more surface area of touching the ground. Which is odd, because there is a large part of the foot that isn't suppose to touch.  So my body compenstates for this by rolling my ankle out.  Which is bad, because I am woefully unstable with my ankles to begin with.  This moves my whole leg out of alignment and I get sharp twingy pain shooting through my knee.

Recovery is going to be... slow. And I am not a patient person.  It means I am going to have to wait a week or 3 to start fencing again.  Getting up and down stairs is still tricky and practice is in the basement. And I am going to have to rely more on Bob, my sous chef for RW.  But we had this contingent in place for this possibility. Ironically having the menu kerfuffle actually made the menu less complicated to execute.
alysten: (ToeCozy)
2012-09-20 05:58 pm

Feet update

Stitches are finally out.  The internals are mostly dissolved. I have a new set of steri strips and hopefully they will not cause the same level of itching as the first set.  Though we are thinking that 90% of all the problems was the allergic reaction to the internal sutures. The incision is finally healing correctly and is looking less angry. I've been given clearance to start walking as tolerated.

Holy hell that hurts.  My ankle and foot don't quite know how to behave and there are parts of the sole of the foot that are still pretty angry. On a pain scale of 1 - 10, where 1 is "Wheee I'm having a good day" and 10 is "OMGWTFBBQ SHEEP ON FIRE ARE IN LESS PAIN THAN YOU",  I am camped out at a happy 7.5, "OMG woman will you let the drugs work first before trying to walk". If I can stand upright on my own, I might try a proper shower later. It's the little things in life you miss the most like walking and proper showers when you cannot do them on your own.
alysten: (ToeCozy)
2012-09-07 05:46 pm

Gah... the itching.

For those not on the G+ or the FB, I am allergic to my sutures. 

And this is where I whine a little... )
I'm doing ok.  I realize that I am whiny and a bit on the "i'm 5" state. I am just frustrated and a little depressed. And I am preparing myself for the fact that my stitches are more than likely not coming out on Monday.
alysten: (Default)
2012-09-05 02:14 pm
Entry tags:

[Sunday Dinner] 9-2

There was no cooking this past Sunday.  I think it's because I exhausted myself the day before.  However, were from scratch cupcakes made on Saturday for a party we went to.  So I will give you those instead.

Salted Caramel, Maple Bacon cupcakes.

Recipe... )
alysten: (ToeCozy)
2012-09-01 12:08 am

#@$!%@@

I think I have an allergy to the steri-strips that are holding part of my insisions closed.  I have not stopped itching for hours and the benedryl isn't working.  This is really not how I want to spend my weekend... in the ER for hives.  Trying the cortizone cream next.

Sigh. 
alysten: (ToeCozy)
2012-08-30 07:59 pm

Update

I have moved to the everything itches and is still on fire phase.  Still taking a boatload of drugs to counteract side effects of the boat load of drugs. And anthasesia bites big rocks.  It is super hard on my body. It has been a week since the operation and I am still feeling it's effects.

But tomorrow Katya is coming over for a sanity play date. And there will be buttermilk maple bacon cupcakes with chocolate frosting. And she will help me put beads on my otherwise bland surgical shoes.  Saturday, I will be bring ing the cupcakes to a party and celebrate international bacon day with like minded folks. Monday is museum day, featuring the dead sea scroll exhibit with more friends.

All in all, I am right where I should be given being house bound, not mobil and drugged up the wazoo. 
alysten: (ToeCozy)
2012-08-27 04:05 pm

Feet update

I had surgery on Friday to remove a fibroma in one foot and a screw in the other.  Ended up as a guest of Presby for Friday/Saturday.   They wanted to watch my pain levels and my blood pressure (it can go a little wonky after surgery).

Onward for details... )
 I can use any good thoughts you guys have.  I am having a hard time mentally with this. I am tired of being at war with my body.  And I know there will be more to come. I just hope there is a break before the next battle.
alysten: (Default)
2012-08-27 11:02 am

[Sunday Dinner] 8-26

I am back to being non weight bearing and on my scooter.   Cooking while on the scooter is a challenge. The muscles are out of their usual position and I have to do a lot of things sideways. I am desperately trying not to pick up the phone and order out just because it is easier.  Instead, we bought food that can be cooked in the crock pot and sauces and sides that are "heat and eat".

The goal of Sunday Dinner is cooking wholesome foods and having good conversation. And even though I cannot sit at the table right now, we did enjoy our dinner on the couch, in front of the TV, which we did not turn on.
Read more... )
What did you guys have?
alysten: (Default)
2012-08-20 03:15 pm
Entry tags:

[Sunay Dinner] 8-19

The recipe is a little labor intisive, but it was well worth it. Most of the time is in the preperation of the ingredients and the hurry up and wait in the brining.

Menu
  • Brined pork chop, stuffed with herb goat cheese, topped with a brandy pear balsamic glaze
  • Garlic mashed potatoes
  • Roasted asparagus with pear balsamic vinegar
  • Cheesey garlic bread
Details below cut. )
alysten: (Cook)
2012-08-20 02:35 pm

A quest

I am on a quest, to reclaim parts of me that have taken a back seat recently and I am starting with food.

I am actively trying to bring my lunch to work and not spend money on going out to lunch (except as a treat).

I am trying to buy wholesome food, including quality protein and produce.

I am working on having more meals eaten at the dining room table and not at the counter or in front of the TV.

I am striving to make quality time with my spouse over a good meal.

I trying to drink more water and less caffeine.

I am cooking the food I buy and trying to reduce how much gets thrown away.

I have rediscovered my love of slow cooking and my crock pot.

So far I have managed to cook a meal every day since returning from Pennsic.  And it has been glorious.  Last night we even managed to sit at the dining room table. Projects were pushed aside so that [livejournal.com profile] telescope_merc and I could sit and enjoy each other's company.   I've decided that this is important enough that I am bringing back the concept of "Sunday Dinner".  Each Sunday (events permitting), I will post a menu, a picture and a recipe for our Sunday dinners. 

I challenge you guys to do the same.