Wash has had about 4 new meds added this week; I've been spending a lot more time watching him and dealing with the short term side effects. I've wanted to write and it's frustrating that my own personal time has shrunk back to none this week. Wash just needs so much care and attention right now, and we (us and our SW) still have not heard back from the insurance about Wash's ALTECS care. (Who pay/cover respite care and such so I can do the things that need to be done outside of the house etc) It's frustrating.
The good (ish) news is that being treated like this, ignored on a human level, it fills me. It stokes a fiery place in my heart that fills for Justice and Righteousness. It makes me feel like there might be a purpose for me in the world after all; I don't think I am ever going to go back to finish my degree in Forensic Anthropology; Oesteology. Every skull is my husbands'. Every face I have to glue back together is his. It's fucked with me too much.
I don't think medicine is my thing. Taking care of my husband is different; it's necessary. I have never wanted to work with/on living patients, I still don't. I admire like hell the people who do- so far all but one person on my husband's team in the last two plus years has been a godssend. They have been kind, concerned, caring, and dedicated. His nurses, his technicians, his pharmacy group, his doctors- from his Primary to his Oncologist. They show over and over how he is a person, not a disease. If you are involved in the medical field, we might not always say it, but for everything you do for us patients, Thank You.
For me, I feel like I am becoming more of an - activist. Someone who speaks for those who cannot. Someone who works to change public opinion and policy. Someone who can work inside and with the law to change it if needed.
I can try to be a Poverty Interrupter.
A Healthcare Activist.
A spokeswoman for Human Rights.
I'm feeling more Hope for myself when his end comes. I'm starting to be able to be in a place mentally to allow myself to think about the real future; the one without him, where I am still alive. The one where I'm a widow, but I'm living. It's hard and so gorram painful to think, but for the first time since we were told in 2009 he was dying, I can think about what might happen to me after he does.
I want to be the change. I want to help make sure no one else so young like us has to face this. I want to move the country away from having to have thoughts like, "Pay for Food or Medicine?"
My garden continues to come along well. The flowers have all settled in since transplant and the bulbs have almost all come up too. The scent is so lovely. The peas and beans continue to grow by inches every day and I'm harvesting a cherry tomato or three about twice a week. The garlic grows, the rosemary thrives, and the carrots are coming in too.
I decided to treat myself and instead of putting a few dollars away for something I need (I do that all the time. Too much really, but I always put Wash ahead now) that I would grab what I spotted on clearance at Target and got some solar powered string lights for the backyard. We have 12 solar stake lights around the back and garden currently, but nothing to give depth to the fence/border of the back. I'm honestly quite excited and happy with it- the design is pretty and I like making the back into a real happy and comfortable space for us to spend time in. The weather will not hold out more than maybe 2, 3 more months so I have to make the most.
I will lastly just relate our story of being good humans and neighbours; we wanted to go for a walk to the post office yesterday and discovered left on the sidewalk by our yard/Church parking lot was a baggie left with pills. Also a few half drunk Bud Light bottles. We called the local police - it was next to a Church and across from a house with a lot of small children living there- the pills needed to be taken or disposed properly. It only took about 15 mins to have an officer come out and he did a field test on the pills (3 different kinds, about 6 pills and one crushed one) and to everyone's shock- they were all blood pressure control pills! 3 different scripts, but all for blood pressure. How odd! Wash says he wants to write a short story about the pills or something, as it is just so... odd. I guess in this instance someone did really lose their pills!
The officer took them to be destroyed back at the station and we went on with our walk, less fearful for the safety of the local kids now.
Never really a "boring" day here, something always happens.
As someone directly effected by cancer of course I have thoughts on the whole Susan G Komen shitpuddle. But, my friend Lara who lost her mother to breast cancer, and has been fighting it herself has much more weight and connection to this than I. I will ask that if you want another voice on the direct negative impact SGK has caused this week by denouncing Planned Parenthood and ending funding, please hear her voice.
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Hot Fuzz!!! I know of only one other person who knows that movie! Well now and y'all. So so funny!
ReplyDeleteYour garden sounds wonderful. I am glad it is growing so well.
You sound well. Well, well-er. :)
#1) By your actively "going" with Wash~~Every Single Step Of The Way, Then And Now~~through his brain cancer *hell*----(not to mention your own illnesses!!)----you've been FORGING, all along, The INDOMITABLE *S.*T.*E.*E.*L.* Of Yourself, Tashi............ IN that (classic) *F.*I.*R.*E.* Of Incredible Pain And Suffering, which often will either kill the caregiver; OR make the caregiver............ *stronger.*
ReplyDeleteThat awful, terrible "fire"............ has FORGED you............ into someone stronger, for sure!!
#2) You can still fully *enjoy* the B.E.A.U.T.Y. of your new, transplanted, (*glowing*-at-night!!) garden............ i.e., with your senses of vision, touch, smell, and taste; and of your hearing the birds chirping out back, along with the lovely sound of a nighttime breeze.
You've also retained your C.O.M.P.A.S.S.I.O.N. For Others, e.g., this past Thursday, in genuinely *protecting* small children in your neighborhood from possibly ingesting pills of an unknown nature. (And ingestion, by a small child, of anywhere from 1-6 even legitimate, doctor-prescribed anti-hypertensive Rx pills could potentially cause serious harm, as you know).
#3) So, you haven't lost your ability to enjoy true BEAUTY In Life; or to be COMPASSIONATE To Others; but............ now you're driven--DRIVEN--*D.*R.*I.*V.*E.*N.*, Tashi!!
I understand (I think!) how it is to "feel driven." In the ways that you'd like to make a difference, all of your previous coursework for your degree in Forensic Anthropology; Oesteology, is (in my opinion) NOT useless at all, because it has helped you to (up-close-and-personal)............ *understand* the very BASICS of the human body, (e.g., like skulls and faces!!)
So, that education, along with your direct, personal caregiving of Wash, both (frankly) give you a SOLID BASE of............ knowin' what it really means *to* PERSONALLY take care of someone who is very, very sick. How many----(i.e., HOW MANY??!!)----of those who now actually MAKE the Laws; genuinely FORM Public Policy; and/or really SHAPE Public Opinion about Healthcare In The United States............ have *Y.O.U.R.* "solid base" of education and personal experience, Tashi?? A few, but damn-few!!
#4) One avenue----(and this is only *one* avenue!!)----which would lead to being minimally-"credentialed" so that you CAN *C.R.E.D.I.B.L.Y.* BE............ that Agent Of Change............ is to perhaps obtain at least an undergraduate degree in Health Policy and Administration; or a similar field. (I have a B.S. Degree in Health Planning and Administration, which is the same thing).
ASU in Phoenix has----(and you probably already know this)----a "Health Sciences (Health Policy), BS" Program; and this is the link for the 2011 - 2012 Major Map:
https://webapp4.asu.edu/programs/t5/roadmaps/ASU00/NUHSCHPBS/2011
#5) Anyway, I'm sure your Readers may have additional thoughts about *H.O.W.* you can achieve your Future Goals And Aspirations............ so that you CAN BE "the change," Tashi.
(((*Hugs*))), and prayers, to you and Wash both ~
*P.S.: Thank you so much for your kind appreciation for all (of us) who are in the healthcare field, too!!
With each post, I find your strength of will - to face what's coming and say, basically, "bring it" - so ... powerful. You've already faced times and circumstances that would have many (including me) melting into the floor. Whereever the universe takes you, I know it'll be on your terms. Bless.
ReplyDelete@Racheal re "Hot Fuzz" - now you (sort of) know two. ;) And you should look for "Burke and Hare": a nasty black-comedy with Simon and Andy Serkis.
new to your blog, very sorry to hear of your struggles, my thoughts are with you and yours. Im curious about the link you've shared,my mother is also in her battle of breast cancer. I fear everyday.
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