Tuesday, September 22, 2009

On "Acceptance"

Well, things on the health insurance front are looking up. I also heard about two apartment complexes that I might want to look into.....just not sure I am ready for that, esp. not after the last few months, however, maybe my friends/colleagues all see something I don't see, they keep telling me, "It's time."

Here's the thing: The two housing units I am looking into are "accessible units," one is section 8. What I can't handle is this: The day I move into an accessible apartment, the day I get a section 8 voucher, is the day I am going to have to accept some stuff. Getting my own apartment can be both one of the happiest, as well as one of the saddest, days in my life. I am not sure for many reasons that I am ready for that. I LOVE living at home, and my rent is FAR cheaper here than even section 8 would be.

A social worker, who also has a disability, said to me today, "Sweetheart, you have a permanent disability." I told him I don't consider myself disabled. He has cerebral palsy, and answered me that he does not consider himself disabled, either. Wow, disability really is a social construct. Within the individual, it does NOT exist. You are who you are.

The social worker says, "It doesn't sound like your parents are running away from you. Try living on your own for 6 months, a year. If it doesn't work, move home, your situation is no worse. If it does work, great!"

That makes some good sense.

I talked with my friend who had a spinal cord injury, years ago, and another who has a disability he was born with. I said how I am NOT ready to accept that I "have" a "permanant" disability. My years of denial have suited me quite well, thank you--I think denial is not a bad thing, it is something that allows one to push limits, and succeed to the highest extent....it's just not serving me well when it comes to living on my own. I am doing VERY well. It's just that there are still a few things that need to be ironed out.

I am not ready to "accept" that I "have" a disability. I don't want to accept that that is what is supposedly the reality. This is because Life is GOOD, I am just slightly inconvenienced at times. I AM recovering, it's been 8 years but I AM recovering. I am SO MUCH BETTER than I was 8 years ago. I just don't know how many more till things are where they should be.

Apparently, a "permanant" disability is one expected to last longer than 12 months. Oops, after 8 years.....!

My friend warned me, the day you accept it is a shitty day.

I intend to put that day off as long as possible, preferrably bordering on never. Again, if I listened to everyone who told me I "shouldn't/couldn't" do college, I wouldn't have succeeded. I am doing well!! I just am not quite where I'd like to be.

I just feel like, as long as I live at home and I am working to save money and better myself, I am still getting better. I feel like the day I leave home, and go into the "system," and live in a "project," I am losing, giving up hope, when it is not really necessary to do so. Better I save rent money by living at home while I recover....problem is I am not getting any younger, and that could be years away....how do I pass time and make it valuable/meaningful?

I'll start by going on, and enjoying, my vacation.

I feel like once I get into the "system," there won't be a way out.

I work in a housing project.....It's like a college dormitory....I do VERY poorly in that kind of a setting, overall. I've learned, though, from my job IN a housing project, that if I move into one of those places, I need to keep my nose to the grindstone, turn my apartment into my clean and "sacred" place, and avoid socializing with the other residents/tennants....that causes drama, it's important to have a LIFE and FRIENDS outside the project.......I must NEVER forget that or stray from that.

Wow, I really don't want to live in a project. Not one bit.

And yet, it could be a way to break from my current, stagnant routine...

It is all very confusing. Even worse, I need to make a decision, FAST.

For now, I'll keep slipping my parents money when I can, and working to get better...so far that plan has served me well.

The thought of moving into a "project" is terrifying. I don't care if it is in an "oK" section of town.

That first night, laying alone in the dark, I'd be sobbing. I HATE being alone. I'd be MISSING my dream of true independence.

And projects have RULES, like you can't be away more than "x" number of days per year or you obviously don't need a house too badly you could just keep crashin' whereever you go. Screw that.

If I want to see friends, etc., because of fatigue, I SPEND THE NIGHT since driving home is oftentimes not an option. So, humor me here, does that mean I'd lose housing?
Technically, it could, since other folks don't even have that as an option. It makes sense, in that regard.

For me, though, being a sociable lady, who HATES to be alone and gets lonely and bored and depressed easily, thats bull. no other way to put it.

hrms......

Yep, the projects would not be good for me.

Besides, right now I go to work, and I come HOME. To a house, with it's own DooR. I have a room, I have a yard, I have FAMILY.

I can't even FATHOM going to work in a project, then coming home at night to sleep in another. It would be like I could never escape the cycle!!!!!!!

Probably a real bad idea.

Will give more money to Parents, who are AWESOME, soon.

Saturday, September 19, 2009

First Ammendment Rights and Communication: Disability

I am beginning to think that we live in a country where, if someone does not like what you have to say, they give you a pill to shut you up. I had an appointment with a new(er) doctor yesterday, he has only been attempting to treat me for a few visits now. I had a surgery that didn't go that well years ago, and as a result, have had a total of 3 corrective surgical measures taken. Over the last few months, I am getting stabbing pain when there is any pressure near the surgery site. In the past this has meant: Migrated clip, suture granuloma, hard plastic gut suture poking me because it shifted/broke/etc.

He did an endoscopy. Wooptie freakin' do. It doesn't visualize the surgery site. Without further testing or imaging or even speaking to my surgeon who has done repairs, he tells me it is basically "functional abdominal pain," and recommends I increase an antidepressant, not knowing anything about my history of medication-related problems, some of which have been VERY severe.

I ask him about the dilated bile ducts in my liver: A National health organization says this is not normal; he says it is, and that it is a 'compensatory' mechanism following gallbladder surgery. I'll give him this, he made a good argument. And, my last liver enzyme count was fine.

After I am crying, telling him that I do Not normally have this pain, and that I only called him BECAUSE I was having a problem, he decides to order an MRI to check the bile ducts.

He tells me HE gets frustrated with "functional" abdominal pain, because he can't do much for it, and recommends Tylenol. For some reason, it took 3 tries for me to tell him, I do NOT have diffuse pain, rather, point tenderness. Give me a freakin' marker, I'll put an X on the spot.

He has so far suggested a medication which I KNOW I cannot take, and increasing a dose of one that I am currently on, but that from past history, my doctors and I have learned the hard way, needs to be kept to a minimum.

Rather than initially ordering the MRI on someone whose current set of symptoms started with a new exercise in physical therapy, that may have aggravated some old insults from a "dirty" surgery, he recommends an increase in an antidepressant. Nice. Try to SHUT ME UP, because you can't wave a magic wand.

But, when you have a history of depression, or any other psychiatric disability, or anything affecting/viewed as affecting cognition, and any difficulties communicating your needs (my old Independent Living Specialist says communication was always my issue) people don't listen. Suddenly, instead of looking at the whole picture, it's "You must be mental." It doesn't matter that you had a clip removed from your stomach and they had to take your appendix, too, so your insurance would pay. It doesn't matter that you've had "revisions" done to surgical sites. You must be "mental."

The frustration is overwhelming. I am crying, begging the doctor to help me, and he tells me to up my antidepressant, without considering the fact that I've skirted Serotonin Syndrome (yes, it's VERY real, it's basically a drug overdose. Do your research, look it up) in the past. Meanwhile, he is repeatedly poking my stomach while I am telling him he needs to STOP, each time he presses down, it feels like a thorn is being stabbed into my guts. He doesn't even know if he is damaging something!!

I call my good surgeon who has done all the repairs from the first, crappy surgery. The nurse who knows me and my history, is very kind, and accommodating, and knows the first surgery was a bit of a FAIL, to say the least. She is already thinking, remembers me as the one they took the clip out of. Apparently, (thankfully) this does not happen every day, and is rare enough that I am memorable. Doesn't register with the gastro doctor, though. I have an appointment for a consultation with my "hero" surgeon, in a few weeks. Thank goodness!

His office is already concerned about hernias, gallstones, spasming, more debris from the original surgery......

Meanwhile, the gastroenterologist, disregards the fact that I have definite point tenderness. Disregards my past surgical history. Doesn't even ask to speak to my surgeon if he thinks I'm full of you-know-what. Tells me to up a drug when I tend to react badly to that approach, we are talking EXPENSIVE FAILURE when I get a drug reaction. Everything from heart issues on down the line.

Literally, its someone not taking the time to comprehend, and saying, I don't know what to do, you must be unhappy and that is causing your pain, instead of realizing I am unhappy because I am IN pain and apparently have difficulty communicating that fact, or they just have difficulty understanding it, but cannot admit to their own limitations.