what i didn't want to do

so, since i was diagnosed i've really avoided actively seeking financial help. i hate asking for money. i'm not sure why charity has such a bad name, but somehow giving to charity is good, but accepting charity is bad. odd. anyway, i give in.

the way our insurance works: we have a big deductible. we chose this because the other option is paying a little every single time i visit a doctor. that would probably cost more. but paying a huge deductible isn't really a lot better i guess. either way, insurance is expensive. the deductible is expensive. traveling back and forth to a specialist is expensive. paying for hotel rooms is expensive. and along side all of this, we try to keep living a sort of normal life, after all, we have a 12 year old at home.

so, i'm asking for help paying our deductible. we can mostly manage the rest, but please consider a small donation. it's shocking how quickly a little bit here and there adds up. know that i truly appreciate the help.

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planning...

i'm usually a fly by the seat of my pants kind of gal. but the camino... while once you get there may be a fly by the seat of your pants kind of thing, before... there should be planning. especially if i'm doing it in a unusual sort of way.

so since i'm planning to walk it in 12th century garb, i'm starting to make plans. plans for what the clothing should look like. after all, i'm planning on taking 3 "underdresses"--they be made with pretty much the lightest weight silk i can find i think... so they'll dry quickly; and 2 "overdresses". i'm not completely sure what i'm making those out of... possibly linen, possibly silk. still debate, on those. but one way or the other, planning is required. PLUS: people are purchasing pouches that need to be made out of the fabric of this clothing. that makes it more interesting.

here's a little video with images of shells.... if you watch you'll understand why.

please consider supporting my Camino Journey & CD
http://www.kickstarter.com/projects/808193390/the-camino-de-santigo-the-cd-and-the-pilgrimage

get set!

http://www.kickstarter.com/projects/808193390/the-camino-de-santigo-the-cd-and-the-pilgrimage

scary stuff... and yet. with my soul in my throat tonight i finally made myself hit the green "launch" button on my kickstarter.

i'm nervous, and excited and really hoping that you'll grab your shoes and shell and take a walk with me....

getting ready....

so i'm working on a kickstarter.... here's a video, a song and bit of information.

gallstones

yeah, so, last friday, after fighting for some sort of diagnosis that would cause the endless nausea, too full feeling, breathlessness, abdominal pain, etc etc, for about 8 months now, i finally got a real diagnosis. i have gallstones. i've noticed things have been getting worse for months, after every test known to man (ok not quite but the list is pretty extensive: EKG, ECG, endoscopy, colonoscopy, chest x-rays, another EKG, endless blood tests from complete metabolic panels to one that finally showed some inflammation somewhere).

a couple points for those with CML. apparently the weight loss that many CML patients experience (i was losing about 5 pounds a week right before i was diagnosed--i dropped a full pant size in a week near the end there) can cause gallstones http://win.niddk.nih.gov/publications/gallstones.htm. additionally, CML patients are rather more likely to develop gallstones: http://www.ncbi.nlm.nih.gov/pubmed/19349718 so, keep an eye out for the symptoms.

my symptoms were pretty straight forward and now, looking back, probably anyone should have looked for gallstones after they eliminated ulcer.

high upper abdominal pain (mine was right in the middle, but sometimes it's on the right)
shoulder blade pain
endless belching
pain grew worse in the evening
pain that grew worse when laying down, and leaning back.
pain behind my sternum
feelings of panic
heart pain
breathlessness
undigested looking food coming out the other end
feeling of fullness that wouldn't go away
lump in my throat

i complained of these issues at various times. probably my oncologist should not be expected to catch an unrelated disease issue, and i'm not mad at her particularly, altho given that CML patients are more likely to get gallstones than average, she should perhaps have considered it. but my GP should unquestionably have suspected this. gallbladder removal is one of the most common surgeries done in the US. http://medicalcenter.osu.edu/patientcare/healthcare_services/surgery/intraoperative_care/common_surgical_procedures/Pages/index.aspx
when it became obvious after endoscopy and EKG that it was neither my stomach, nor my heart, more tests should have been done. good grief, the doctor that finally caught it, first knew something was wrong because he did a fairly simple blood test: http://labtestsonline.org/understanding/analytes/crp/tab/test . she should certainly have done basic blood tests, x-rays and such before attributing it to "stress" or "being overweight" or not getting enough exercise. all of which she suggested. while i like her bedside manner, i'm not fond of her stick-to-it-iveness. not at all. when it wasn't an ulcer, she jumped very quickly to, "you've gained lots of weight since getting diagnosed with cancer so it must be related to those things".

i'm so glad that i finally headed for an urgent care and insisted that something was really wrong and they needed to figure out what was causing the pain involved. sometimes it's hard to trust yourself, but if you are in pain, find someone who will listen, and tell everyone it takes to get them to listen, and do the tests. no one deserves to live in pain.

on being a pilgrim

Deciding to walk the Camino has changed my life already in ways i have difficulty explaining. i have more energy. I’m waking up earlier. Doing more every day. Feeling like there is purpose to my life that I think I had given up on having. And more...

People want to talk about, and I’m not sure what to say. I decided on a whim. I think that emotionally I need a symbolic thing that will show that I am changing my life. Being diagnosed with cancer created hopeless feelings in me, about all the things I could not do. All the life changes I would have to make. I allowed it to make too many of my decisions for me.... I’m finding already that I feel differently. That I have more hope, more energy, more of a life. The symbolism of walking, of going on pilgrimage is changing how I feel about my cancer, and how I feel about my life. 

I’m trying to plan what to take.... just not sure yet.

I’m also trying to plan how to do my kickstarter. I’m working on what to my patrons for various levels of support. Do you have any suggestions? My thoughts so far:

1.     A rock from the Camino (it’ll be small)

2.     Postcards from the walk

3.     Personal letters in persona from the walk

4.     Carrying tokens (that don’t weight much) for other people on the walk and leaving them in towns along the way… (I’m thinking maybe I’ll carry an item  for $1/mile—that would mean I’d carry an item all the way for $500)

5.     Bringing said token back (for another $500)

6.     I’m going to take apart one of the outer dresses and make it into pilgrim pouches to gift to patrons

7.     I’m going to do the kickstarter to create an ebook about my experiences both in persona and not—some patrons will receive free ebooks

8.     Access to a “private” blog

what to take on a pilgrimage

i'm not a list maker. at all. but in about 345 days i want to be on the Camino. i need to plan. mostly because weight matters.

1. 3 under dresses
2. 2 over dresses
3. a wool hood/capelet thing-y
4. leather bag
5. socks--hand knit or commercial?
6 bicycle shorts to avoid chafing
7. modern undies
8. camera
9. cell phone
10. a passport (i need to get one pronto)

?????