thanks and changes in store

i realized looking in the mirror this morning that i was seeing a face i had not realized i had let back into my life. she was a face that lived in my life years ago, that i had gotten rid of, i thought permenently. oddly enough this realization came in a funny way. i went to our local SCA meeting and there were some very negative nellies there. i said to my hub "if they're going to be so negative, why do they bother showing up, why can't they just leave?" this morning i looked in the mirror and saw how far down that path i had gone in my life. i suspect it started long before my diagnosis, but that sort of pushed me over the edge into a virtual free-fall.

to those who hung out with anyway, and tolerated me, thanks. i appreciate all you've done, and know that it was undoubtedly hard to stand by and watch. unfortunately, as a wise person pointed out this morning: telling someone "the stove is hot" only goes so far, and kids and adults usually have to learn those kinds of lessons for themselves. i appreciate you all letting me find my way back to myself and to home and waiting for me to get there. i may need an occassional reminder so that i don't go back to my pity party, but if you would, make it a positive one?

i've made some positive decisions to make sure that all the responsibilities that need taking care of are taken care of, and as such i'm no longer regional exchecquer. the job needs to be done, and right now i need to devote my energy to things that no one else can do for me, and this is one that someone else can do. (thank goodness for that).

i've called a doctor in Raleigh NC who is a leukemia specialist. i'm working on getting in to see him. hopefully sometime after the new year. this is a positive move for me. i want to feel good and positive about my care, and plan to move in that direction from now on. being my own best advocate, i have recognized that i need to go to a doctor that i trust and believe in, so, i'm working toward that. :-).

in Schattentor, i intend to be a positive resource. the point of SCA is to have fun and have events. making money is a occassional plus, but not only not necessary, but not even a goal of the organization, hence the "not-for-profit" status that we hold. we have enough money currently to run the shire for several years without making any money at all. i'm not relying on that, but i'm going to not worry substantially about making money, because when one focuses on that, it is difficult to see the bigger goal of actually reenacting the middle ages, educating ourselves and others and having fun in the process. i have thought for a really long time that we need to be far less concerned about events making money. SCA needs to look outside of SCA to make most of its money. hold rummage sales, charge a small fee for demos, etc. instead of trying to make every event produce money from our own members.

as such, i'm planning on a Schattentor rummage sale for spring. we'll host it at our house, just off west blvd and half the money will be donated to schattentor, the other half to the endowment fund. if you've got stuff you don't want or aren't using (not SCA stuff, just stuff), consider sorting through it and donating it to this rummage sale. if you aren't in schattentor i challenge you to do the same! let's see Northshield fully endow the fund! it's a valid goal, and i intend to make it mine to see that this happens, not when someone dies (that's a far too negative idea) but now, while i'm alive! who's with me?

i'm setting myself some goals. one is to get my harp in tune and start playing it for a little while each day. another is to publish a knitting pattern. i have a fabulous plan for something to submit to the 2012 Jane Austen Knits of Interweave. http://www.knittingdaily.com/blogs/jane_austen_knits/archive/2011/10/13/call-for-entries-jane-austen-knits-2012.aspx
i'm not allowed to blog about the thing, but look for it soon, when i am allowed to. i'm positive my idea will work and be fabulous!

i'm debating about whether to attend boar's head in milwaukee or not. i think i might be able to swing it, i haven't decided yet for sure tho! who else is going? and if i managed to get to minneapolis, is there someone i could ride on from there with perhaps?

anyway.... thanks to all and hugs around!

too much

lately, today especially, i feel like i am incapable of dealing with the responsibilities i have. so in the next couple of days (i have tomorrow off) i'm going to do some soul searching and decide what things i can handle, and which i just can't do right now. this is not personal to anyone or anything. i am just feeling the difficulty of being sick, and feeling like i live life in a fog, and feeling like such an imposition on so many people.

some things will have to change. some responsibilities that i took on when i didn't know i was sick, or how sick i was, will have to go away. i need less going on in my life right now.

this blog is the one place i feel like i can actually express my feelings right now, so if you don't like what you're reading i'm very sorry. please let me say what i must in at least one place in my life.

ugh

today is a bad day. i hate them. i've spent most of the day in bed feeling lousy. i meant to have a start on criminal minds yarn done a couple of days ago, but now i'm hoping to get it started by tomorrow. yeah, i'm so damned tired of all of this. the diarrhea is back full force along with nausea and neck pain and swollen glands in my neck. the rash is still hanging around as is the edema, which is sort of an all-over swollen feeling.

i can't sleep, i'm freezing cold, i can't concentrate very well. guess i'll take a bath and hope when i'm warmer i'll feel more functional.

morning face

and hands.... so, when i was diagnosed with CML i weighed about 174 pounds, give or take. (wish it was less, but there it is). this morning i weighed myself--2 months in and i weigh about 182 or so. i had settled into weighing about 178 until a couple of days ago--like water retention. but now i have gain another 4 pounds, undoubtedly also edema since my rings and face are hugely swollen each morning. by evening it has moved to my legs and feet. it's not pleasant, but i've been told nothing will be done until i gain at least 10 pounds. i was really hoping i'd stick with 178, and just be able to ignore it.

additionally, my most recent odd symptom has developed. i am having fairly significant pain at the base of my neck. not like stiffness from bad posture, like pain. i'm not sure what that'll turn out to be, but when i call about the added edema, i'll report it as well. i don't have an appt for a blood draw for another 10 days or so.

tomorrow, my plan is to call the leukemia specialist in Raleigh NC (that's where my sister lives so i'll have a place to stay) and see if i can get an appt. to see him. i feel like i really need to see a specialist who knows more than dr. robinson (or dr. coldfish as my mother called him).  You need to understand that this comment from my mother is really shocking. she generally looks for the best in people, and seldom gets upset with people and i don't know that i've ever heard her call someone a name before. EVER. in 44 years. so, this, this is the ultimate insult.

my hope is that he'll be able to look over my records that i will be able to wait to see him until Jan sometime, so that our holidays won't be any more disrupted than necessary. of course, in an emergency--if he thinks things are going badly (which i doubt will happen) i guess i'll be on a plane and there before thanksgiving. in the meantime--i'm living with these side effects, as well as the symptoms i'm still having, because the alternative--it's far worse! hugs everyone....

so yeah....

Lately i feel like such a complainer. i don't mean to be. but if feels like right after one stupid side effect sort of eases up, another one jumps in to take its place. the latest in the list is bone and or muscle pain. it's hard to know exactly which, but one way or the other, last night i started having these odd stabbing pains deep inside my limbs. mostly it was in my right lower arm, but also my other arm and some in my right lower leg. before i went to bed i took some advil (which i'm supposed to be careful about ) and tylenol (which i'm also supposed to be very careful about) so that i could get some sleep. i slept restlessly, and woke up feeling pretty cruddy.

thank good for amanda on these days. because she is home and her only job is helping at the shop she was able to fill in this morning for me, and then i'm in this pm. i'm feeling far better now, altho this morning the cold feet and hands thing kicked me in the butt.

i've had issues with cold hands and feet since i was 19 and diagnosed with Raynaud's disease. this is a pecular disease where the my hands and feet turn white when exposed to cold, then if they stay cold long enough they'll turn blue. (i try not to ever let that happen). they feel not quite but almost numb, then when they warm up they get red and it feels pins and needles and painful. basically the vessels in my extremities tend to spasm in response to cold (and stress sometimes). additionally now, anemia (which is often a side effect of gleevec apparently) causes similar symptoms, so i'm suffereing from a double dose of really cold hands and feet. to the degree where part of the time they just won't warm up unless i take a hot bath. this morning i took a hot shower to try to get warmed up, my hands and feet got warm but immediately were cold again when i got out. as i write, i have a little space heater that i usually only use when it is really cold out, and i've got it blowing on my feet which are really cold.

the edema continues. my face is generally quite swollen when i get up, it seems to let up within an hour or two tho. but by evening my feet and legs are swollen and sore.  so it goes. the rash is irritating, litterly, but nothing unlivable, just a bother. the nausea--well, it goes on as well. luckily the diarrhea  does seem to be back under control. none of it is stuff that will kill me like untreated CML will, but none is fun. and all of it changes my life in ways i am having trouble accepting...

ginger tea

gleevec seems to be doing it's job (my last WBC was 6,000 ish) and for that i am extremely grateful. what i'm dealing with now is two particular side effects: nausea and edema. the edema is particularly unpleasant in the morning when my face and hands are swollen (the skin on my face often hurts and my rings which are generally really loose are too tight). they say i can't take diuretics because my blood pressure is just too low. and i don't want to deal with the blacking out thing when i stand up too fast, i already do that and anymore would be less than pleasant. for the nausea tho, i've been trying ginger tea and mint tea and they do seem to be helping some. i seem to have settled in at retaining about 4 or so pounds of extra water. not pleasant but livable.

this weekend leah and i trotted off to Rhythm and Bruise in Fargo. it was fun, altho i don't know that i'd ever buy another Japanese feast. didn't appeal to me at all. and there was no singing :( sad but true.

i'm still feeling the results of the trip, with more exhaustion than normal. and my brain fog is unpleasant. i hate feeling stupid.

i got a lovely LOVELY prayer shawl from a friend when i got back. it is warm and soft and the perfect thing to wrap up in on a cold evening.  i'll post pics in the next day or two. i need to send off a thank you note, i just haven't had the energy/inspiration yet at the right moment. so, publicly, thanks amy.... i love it!

hot flashes are back this week... along with cold cold feet and hands. it is particularly odd when they both strike at once and the back of my neck is burning up but my hands and feet feel like ice cubes.

walked home from work today in the sunshine. the sky is still blue and even tho it is quite chilly and all the leaves are down, it is still a lovely fall day. look for new yarn colorways in my etsy store soon.... penelope garcia and morgan.... look out! they're gonna be gorgeous.

good things

Stephen (my 17 year old son) made all state choir in SD this year, so on Saturday we drove 5 hours to Sioux Falls to hear him sing. the concert was amazing. and uplifting. First the all-state orchestra performed. i like orchestra... it has always appealed to me a bit more than band, altho i've always been in band and never been in an orchestra. they played a piece by Dr. Yarbrough, a former teacher of mine. it was lovely, and he was there, so i got to chat with him a bit.

then the choir sang. to begin with, let me just say that there is something truly amazing about listening to 932 voices, all performing the same piece at the same time. and well. south dakota has a unique system of all-state choir. they allow all schools to bring at least 1 and up to 5 quartets. these quartets must be comprised of a soprano, alto, tenor and bass. this results in an amazing large choir that is quite balanced. the choir comes together and rehearses on friday and saturday and then does this mass choir concert. it is always impressive, but this was more impressive than most.  Vijay Singh was the guest director and it was obvious from how the students reacted that he was a hit with them. when you listen to a choir that is truly excited about the pieces they are singing and the director, the fun is infectious.

they sang 3 pieces that he had composed, and one in particular that was truly touching. i have never before jumped up after a piece to applaud because i was inspired to do so. ever. but this, this made me do so. it was their final piece alone and titled "Carpenters of God". i wish i could post a link to their performance, but since i can't here's a different peformance with Dr. Singh talking about his composition beforehand http://www.youtube.com/watch?v=w73FXtOYFOw . the piece here is more "expertly" performed perhaps, but something about the vast size and huge range of an almost 1000 person choir singing it was more impressive. even if it was in an ice arena. when he got done, he ran around the bleachers where the choir was standing and got them to do the wave! what fun.

then they sang Battle Hymn of the Republic, which made me cry some more. it was a wonderful weekend. the kind there should be more of. my mom was here visiting and so got to go along and hear her grandson sing. all and all, it was a lovely weekend.

if you have kids, hug them today....make today wonderful, because tomorrow is uncertain.