book readin’

normally, i’m not a book-fad reader (ie reading books that everyone thinks are the new hits, bookseller popular lists, what have you) but after reading a description of “my sister’s keeper” by jodi picoult and comparing that to my illness and eventual transplant needs, i felt it would be an interesting read. despite the really unnecessary romantic plotline, i found the book very emotional trying and challenging and interesting. i enjoyed it. it was desperately hard to read (ie there were lots of tears involved).

Anna was genetically engineered to be a perfect match for her cancer-ridden older sister. Since birth, the 13-year-old has donated platelets, blood, her umbilical cord, and bone marrow as part of her family’s struggle to lengthen Kate’s life. Anna is now being considered as a kidney donor in a last-ditch attempt to save her 16-year-old sister. As this compelling story opens, Anna has hired a lawyer to represent her in a medical emancipation suit to allow her to have control over her own body.

more here.

i’m excited to start my winter break reading (as i am now DONE DONE DONE with the semester officially). i went to half price books and spent $44 on books (but alex’s sister works there, so i got them fro $25). so many booooooks!

family times

so, coming back to manhap’ (manhattan,ks) is always hit or miss. no matter what, i hate being in manhattan. it’s a very sensory place for me, and i feel too much, i see too many, and i hate too much when being there. it’s like a constant flashback of every place in that town, and what that means, and mostly what i wish it didn’t mean. however, going home can also mean friction between family/seeing people i never want to see.

this time was different. good food (ie, not traditional tgives affairs), good times, good people. if every time i went home was like this time, things would be okay (though i doubt i’d go home any more frequently). back to school time on monday. i could not will this semester to end any sooner.

sad dreams

I woke up with such a pain in my heart. I had a dream that I could no longer handle staying in Kansas, and decided to, despite the restrictions I have on my health insurance, to apply to the University of Chicago, and I got in! And they were giving me a $1, 650, 345 dollar scholarship, and I left Kansas. And I went all by myself, with no one there, and everything was perfect in this beautiful apartment I had with high ceilings and wooden floors (fully furnished of course), and somehow Bri was there too. But I woke up so sad, and so unfulfilled, and disappointed.

organ update

Every so often, I’ll go to different websites and read up on the recent literature on liver transplants and biliary atresia. Really, none of the information about biliary atresia changes, because it’s a pediatric disease (meaning, either you die as an infant, or you get a transplant as a child). There is very little research done on adult survivors of biliary atresia, especially those who still have their own livers (like me!).

Anyway, I came across this interesting website that lets you choose transplant centers based on state (most probably I’ll get my transplant done in Nebraska, but possibly at KU Med, if necessary). Then, you can see the demographics for the liver transplants the agency has registered, based on age, race, gender, and blood type. Additionally, you can see what the survival rates for that agency are for 1, 3, and 5 years after transplantation.

For example, at KU MED, in 2009 they have registered 3 organ transplants in the age range of 18-34 yrs, 3 with B blood type (which is what I have, B+), 18 females, and 0 Asians. The 1 year survival rate for transplants performed from 1999-2004 in the age range of 18-34 yrs is 84.4% (46 alive). The 3 year survival rate is 81.6% (74 alive), and the 5 year survival rate for the age range of 18-34 yrs is 86.8% (73 alive). This can also be broken down by race or gender. Pretty fascinating stuff, eh?

Ooh ooh! Now let’s do The Nebraska Medical Center. In 2009 they have registered 7 organ transplants in the age range of 18-34 yrs, 6 with B blood type (which is what I have, B+), 26 females, and 2 Asians. The 1 year survival rate for transplants performed from 1999-2004 in the age range of 18-34 yrs is 84.4% (46 alive). The 3 year survival rate is 81.6% (74 alive), and the 5 year survival rate for the age range of 18-34 yrs is 86.8% (73 alive). These are the same numbers as Kansas. I wonder if this means that Kansas and Nebraska are in the same region? Something good to find out, for sure.

You can do your own research at US Department of Health and Human Service’s Heath Resources and Service Administration Website: Organ Procurement and Transplantation Network (OPTN).

tiny dancer

Something I haven’t been, but should have been talking about more frequently is the health care reform. As many (hopefully all!) of you know, Affordable Health Care for America Act (H.R. 3962) passed in the House on November 8th, 220 to 215, with a single Republican vote (you can read more about this in the LA Times article here). What does this mean? Well, a lot and again, almost nothing. The Senate still needs to pass their version of a health care bill, then the two bills go to committee, and really we’ll see what remains at that point. But currently the House bill, remaining as is, will:

• Expand Medicaid “to reach a wider range of poor households up to 150% of the federal poverty level. 36M additional Americans will now be eligible for Medicaid.”
• Bar discrimination in health care on the basis of gender identity or sexual orientation.
• Acknowledge LGBTQ Americans are a population likely to “experience significant gaps in disease, health outcomes, or access to health care.” This will hopefully ensure that LGBTQ people are included in future data collection, and that grant programs will focus on their specific health needs.
• End the “unfair practice of taxing employer-provided domestic partner health benefits, allowing thousands upon thousands of LGBT people to obtain domestic partner health benefits for their partners and families without having to pay a tax penalty through the nose.”
• Allow states to cover early HIV treatment under their Medicaid programs. (Currently, states are only allowed to use Medicaid money for patients with full-blown AIDS.) and,
• Fund comprehensive sex-ed programs.

Taken kindly from feministing.com

Wee! Except, of course the Stupak Amendment:

The amendment by Bart Stupak (D-Mich.) and Joe Pitts (R-Pa.) would restrict only the new insurance marketplace (a.k.a. the “exchange”) that the bill would create for uninsured individuals and small businesses. It would have no direct effect on the group insurance policies that cover many American workers and their families. Whether it would have an indirect effect on those policies, however, is an open question. Feel free to offer your speculation in the comment section below.

Specifically, the Stupak amendment would prohibit federal dollars from being used to buy any policy offered through the exchange that covered abortions other than those related to rape, incest or danger to the mother’s life. It also would require insurers that offered elective abortion coverage through the exchange to also offer policies “identical in every respect” except that they did not cover such abortions.

The main effects of the amendment would be to stop anyone receiving a federal subsidy from buying a comprehensive health insurance policy that covered elective abortions, and to bar the proposed government-run insurance plan (a.k.a. the “public option”) from covering such procedures. The amendment would allow insurers to offer “supplemental” policies that covered abortions, but their customers could not use federal subsidies to buy them.

Prior to the Stupak amendment, the House bill would have required insurers to jump through some accounting hoops to segregate the money collected for coverage that was mandated by the bill — and eligible for subsidies — from coverage for elective abortions. But abortion opponents argued that this arrangement didn’t go far enough. Money is fungible, after all, and making the mandatory coverage more affordable with subsidies would also make any additional coverage more affordable.

The same argument applies to the Stupak amendment. The Stupak language would require women seeking coverage of elective abortions through the exchange to sign up for a separate policy, potentially (but not necessarily) forcing them to spend more for the two than they would have spent on a single plan that included the coverage. Of course, their ability to afford the supplemental coverage would be greatly enhanced by the federal subsidies that shrink the cost of the main plan.

taken from the LA Times

What does this all mean? It means a lot of things. This bill is both progressive and restrictive and can do immense things (both beneficial and negative):

• Federal law would for the first time require insurance companies to cover all Americans, regardless of their health status, and would prohibit insurers from denying coverage to people who become sick.
• Individuals would be required to buy insurance. And large employers would have to provide employees with health benefits or face a penalty.
• The bill would open the nation’s 44-year-old Medicaid insurance program for the poor to all Americans making less than 150% of the federal poverty line — $16,245 for an individual or $33,075 for a family of four.
• The government would also create new insurance marketplaces for millions of Americans who do not get coverage through work.
• Commercial insurers, as well as the government, would offer plans in these marketplaces, or exchanges, and be required to provide a minimum set of benefits, including mental health services, maternity care and preventive care.

Taken from the LA Times

I don’t know what to think, but as 23 looms nearer (April 11th, by the by), I can see nothing other than the event that my whole life has been surrounded by. At 23 I get kicked off of my health care, and at 23 a life of tiring and expensive advocacy begins. I go to COBRA, the unemployment insurance ($500/month), and barring me getting a job in the social services field with decent health care, I’ll go into the HIPAA high risk health pool ($14,000 a year) and hope that my parents and I can afford to live like that (and that’s just the deductible!) But if this passes, and it passes with some form of clarity and decent and argumentative change…maybe. Maybe I won’t be living a life of fear and losing my health insurance anymore. I hate the idea of women’s reproductive rights as a bargaining chip, as an idea that’s thrown out the window when things get tough, but tears come to my eyes at the idea of freedom; freedom from a life where the only goal is to get a job, and the only want is to survive. I only want to be able to pay for my right to live; I just don’t feel like that’s too much to ask for.

Variations on the Word Love -Margaret Atwood

This is a word we use to plug
holes with. It’s the right size for those warm
blanks in speech, for those red heart-
shaped vacancies on the page that look nothing
like real hearts. Add lace
and you can sell
it. We insert it also in the one empty
space on the printed form
that comes with no instructions. There are whole
magazines with not much in them
but the word love, you can
rub it all over your body and you
can cook with it too. How do we know
it isn’t what goes on at the cool
debaucheries of slugs under damp
pieces of cardboard? As for the weed-
seedlings nosing their tough snouts up
among the lettuces, they shout it.
Love! Love! sing the soldiers, raising
their glittering knives in salute.

Then there’s the two
of us. This word
is far too short for us, it has only
four letters, too sparse
to fill those deep bare
vacuums between the stars
that press on us with their deafness.
It’s not love we don’t wish
to fall into, but that fear.
this word is not enough but it will
have to do. It’s a single
vowel in this metallic
silence, a mouth that says
O again and again in wonder
and pain, a breath, a finger
grip on a cliffside. You can
hold on or let go.

via apanopoly

website!

Alex (my boyfriend) is an awesome photographer who works at the Lawrence Journal-World, has interned at the Topeka Capitol Journal, and works for the University Daily Kansan (the University of Kansas school newspaper). He and I have worked on a new website for him, and you should check it out.

He’s available for all your photo needs (portraits -including senior portraits, concert photography, wedding or engagement photography and other events, and/or landscape photography), so you should tell all your friends!

http://abonhamcarter.weebly.com

PS: He also has a blog he plans on using to update all of his latest photographs. It’s a work in progress, but you can go here: http://abonhamcarter.blogspot.com/ if you want more info.

PPS: You can see examples of his work here:
http://www.kansan.com/staff/alex_bonhamcarter/

New York City Skyline
(copyright A.Bonham-Carter 2008)

how to not take it home

While I have found most of my classes dis-interesting and unhelpful this year, there was a conversation this morning in my Practice class that I found very relevant. One of the other students in the class mentioned that she was having trouble with not bringing her social work practicum back home with her. That is, she was having a hard time separating work from home, which is an essential (and extremely difficult) skill to learn as a social worker. We were having a sort of open forum discussion in class, and my classmates and I developed a few things that I think help with this issue. Often social work manuals or guide suggest “take a shower” or “light a candle” but I don’t care if I light 100,000 candles, it’s not going to get my mind off of what happened at work. So, instead, I think I will post some of the suggestions my classmates had to see if these seem more reasonable. If you think of more, please feel free to add to them (I’m mostly talking to Katie, since she’s the only social worker I know who reads this), but also anyone else!

1. Find someone other than a loved one to vent with (ie not a husband/boyfriend/girlfriend/wife). This is because, while you may love and cherish your loved one, if all you do after work is bring back terrible things to your significant other, it is sure to destroy the relationship. Now, I don’t think this matters for ALL relationships, but I definitely use it for mine, and I think it helps. Firstly, my boyfriend isn’t a social work student; he won’t have the skills to deal with these issues like I will, so bringing him, essentially secondary trauma, will be negative. Also, I have plenty of wonderful things to talk with Alex. The negativity at work do not have to be a part of that (though I definitely share the positives). Sometimes Alex will ask me how my day went, but luckily I have a pretty easy way out of a bad conversation: both of the agencies I work with (WTCS & MOCSA) have strict confidentiality clauses. Anytime I’m uncomfortable with how my day went or am upset, by stating I can’t tell him what happened that day due to confidentiality, I ensure that I don’t take it home to him.
2. When finding that other person to vent to, see if you can find someone who is a social worker. This can either be someone at your agency (for example, a supervisor) who you talk to for 15 minutes, or a friend you have who is a social work student. My friend Lauren and I carpool to work Wednesdays/Thursdays there and back to KCMO (45 mins-one and a half hours depending on the time we leave). This is an awesome time for both of us to talk. Not only do we get constructive criticism from each other, we also get to talk to someone who may or may not understand being in that situation better (that is being a student in a difficult situation at practicum).
3. Have something to look forward to (cooking dinner, good food, a good movie, snuggling, sleep, etc.) at the end of the work day. That way you can focus on this instead of the negativeness.
4. Make lists of what you need to do (both ongoing and on a short term level). That way you can feel good and accomplished when you can cross something off of that list, and still organize your time to get the energy to complete what’s left on the list.

This is just a short list of the things that stood out in my head. I think it’s essential to learn self-care because burnout is so damn prevalent in the social work profession. I might have mentioned this in a previous post (I can’t remember now), but my practice instructor, Megan, said something to me a few weeks ago that really stood out in my head. She basically stated that I should ask myself if I felt like I had anything to give to my clients. And if the answer was no, then I needed to change something. Because this is a helping profession, and how can we help if we have nothing to give. And we will have nothing to give, if we don’t first give to ourselves. Whether this is realizing that you can’t take too much on at one time or giving yourself deserved breaks or making sure you have a good time doesn’t really matter, as long as it allows you, as the individual to give back to yourself. I’m glad I took the time to write this all out. It will be nice to be able to look back on this and see what I’ve thought about and what this means.

reeeeelax

Today is the best day in the world. I have finally finished my 3 substance abuse papers (one 5-7 pg, and two 3-4 pg papers) which were given no due date, which made them nearly impossible to time manage, despite the easy nature of the subject matter. Additionally, I have completed my Policy Impact on Agency paper, for which I wrote about VAWA (The Violence Against Women Act) of 1994. Incredibly interesting, but again, I’m not sure how I feel about the way I am learning about policy currently. What does this really mean? This means I have absolutely nothing to do until after fall break (unless I want to work ahead). That is the most relieving feeling ever.

All of this justly due relaxation comes at a perfect time. For those of you who do not know, after being released from the hospital, I was taken off meds (even the prophylactic antibiotics I’ve used since I was about 10), to see whether or not I had really improved or if the infection was simply hiding. In this process, either as a reaction to the antibiotic I was on, or further liver damage, many of my liver enzymes (ALT and AST for those of you who would like to research) had increased. As of last Friday (Oct 2nd) I was put back on antibiotics (zosyn) on what they call a 24 hour continuous infusion pump. This means since that Friday I have been connected to this adorable (not) machine and a bag of medicine 24 hours a day, except to shower and change clothes. It makes this awesome (also, not) noise when it infuses medicine into my blood that sounds like taking a camera taking a picture. It must always be with me. Needless to say, I have been incredibly stressed, and due to this I took a mental health day off of school on Monday, which allowed me to get so much accomplished (including much needed sleep). Other awesome things that have happened due to this include not being able to digest ANYTHING and losing hair. Obviously, I am in the best of moods. Supposedly, I will be taken off of meds next Friday (Oct 16), but as my levels have not actually decreased I am unsure as to what this means.

I am lucky. My practicum instructor at MOCSA is one of the most understanding people I have met, and our personalities mesh completely. Because of this, I am being given a lot of room to work around my illness (including leaving my internship early to get a CT scan done at almost no previous notice–for either myself nor my practicum), which has been a relief. I haven’t been volunteering as much as I would have liked, but as soon as this liver catastrophe calms down, hopefully I’ll be able to start doing that again. Anyway, this was a whole lot of information about something that may have been completely uninteresting, however, it does account for the explanation for why I haven’t written in such a long time. Hope all are well.

blurb

i fucking love what i’m doing at MOCSA, and hate school. i would love to update more, but am having a hard time finding the words for them. this weather is very comforting (meaning, i want to be in blankets and blankets, and THAT is comforting). i promise to write soon.

ps: to keep in more current contact with me, please check out my twitter. you can see updates about my life in 140 characters or less.