Tuesday, September 29, 2009

Going Crazy

Warning--skip this rambling rant if illogical rants get to you. I feel like I am about to drop into an abyss right now. Family members' ostracism of a cousin is bringing back bad memories of my own experience of being "disowned" for getting engaged (family truly believed my sister and I were property) and the aftermath of being excluded until the past few years. I reached out to her to offer a listening ear, others found out about it, and now they're all infuriated with me. I guess because I'm not picking on her like a fish ripping the fins off the unchosen one in the aquarium. My sister and I were abused as kids and I can barely talk about it. But a big "fuck you" to Frida for being nice to her, to someone who was badly abused as a child, kicked out as soon as she turned 18, and had so few skills that she had to live out of cars and steal to survive and feed her babies (could not survive on minimum wage alone).

People took my mother aside today, talked shit about me, and told her to call me so that I could be told what I needed to think. Yeah, Frida, rip people's fins off like everyone else! No, my mom didn't participate as they expected and instructed.

I'm upset everyone's bothered my grandmother with all this crap (let's call it what it is) right now. This is not a good idea since she had a mental breakdown and had to be hospitalized after her mother died and I don't think things are going well. My grandmother has, though, continued to participate in the shunning of this cousin. I'm tired of people's racism, prejudice, unfairness to each other, gossip, and just plain negativity. No one seems to have anything positive to say about any family member (and yes, I fully understand the irony that I'm complaining right now). If people are there at their house, they're annoyed. If they're not there, they're also annoyed about that. They're nice to church people and visitors but let themselves get so exhausted by that they take it out on everyone else. Whether you're helping or not helping, you're just wrong, wrong, wrong. There's just no way to win. It's your responsibility to call and others shouldn't have to call you to help, but call to help and you're interfering and taking up others' time. They're gossiping about my mother to me. Oh, no, she has to work (she and my dad are barely keeping a roof over their heads). They're gossiping about my great-uncle to me (oh no, he's there for them). About my sister. I just feel sick about it. I don't respond to it. But I feel sickened by it.

They're using my developmentally disabled uncle like a pawn.

My husband's upset with me because I can't "put out" twice weekly because of extreme pain right now and I'm ready to say to hell with it at all and move with the kids to my sisters' (this arrangement has been agreed on by everyone already--no illegal moving across state lines with kids). I am stressed out enough to feel like I can't unwind at all. I feel sick at my stomach. He's been emailing my friends. Nothing else that I do matters if I can't meet that one need, which he can't meet himself. I feel reduced to a biological function. He's saying I shouldn't have gone to the gardens this weekend because I can't meet my "responsibility." This is not an atypical argument for us. I think this verges on abusive but hey, I'm just one opinion that doesn't count for anything anyway. As a near autistic himself, he's always been lacking in the empathy/other points-of-view department. Like why my friend might want me to get her a birthday present for her birthday party.

Two of my son's three teachers have not been responding to phone calls and emails with brief questions that we desperately need the answers to. One gave him a behavior mark because we turned a signed paper into his weekly signed-papers folder rather than his homework folder (no specific instructions were given for how to return it). Other crap crap crap with them. I have not done anything to them or said anything rude to them.

I can't get my own crap done.

I hate my goddamned life.

Saturday, September 26, 2009

"New" Wheelie Friend

I have a new wheelie friend today--she's new to me as a wheelie, but not new to me as a friend. My second cousin, herself a twin, whom I mentioned a while back, has arachnoiditis and uses a manual wheelchair when she's out and a small scooter at home since she can't power herself. She's so tiny her husband can carry her and her manual wheelchair up the steps into my grandmother's house. I will never be that tiny even if I were very, very thin. It's not the tininess I'm jealous of, but rather the ability to get herself inside in her chair.

When I visit others, I can't get my scooter in. So often I can't attend or must sit in one spot, or I must build in some real "suffer time" for recovery later from being unable to use the scooter or sit comfortably. And yet some people's perceptions of me can be that I'm not very disabled (because they've never seen me using a wheelchair or scooter), or that I'm lazy (not getting up = "giving in," "not fighting it"). Very close relatives--my husband's sister and grandmother, friends we've known for many years whom we see regularly (well, I'm absent a lot) have never seen me use it. Since I can get around my own home well, it really bothered me that my mother-in-law refused to have my own son's (!) and my husband's birthdays here, even though we have the space. I run into this kind of thing a lot. (We can get the smaller scooter in but I have trouble sitting in it for long--transferring in and out multiple times also increases pain unendurably).

Here's an argument for universal design--everywhere. Disability cuts us off from family and friends first. Often I can go to public places for a while but can't go to others' homes because the pain of getting around without the scooter is too much. I can't go out to the pool area where everyone else is, or up to a game room, etc. I can't carry portable ramps in dozens of possible configurations--and thresholds are still a problem. Even when I walk to get in, big steps or a series of steps are a huge problem. I can't gather in the kitchen with everyone else because I can't stand up long and hard chairs hurt--very badly, even with a cushion.

Seeing my cousin's level of disability makes mine seem like a walk in the park--no, a jog in the park--in comparison. It was strange seeing myself looking as if I have high energy compared to someone else my age. She's on a lot of pain medicines, speaks slowly from that and pain, has trouble with word retrieval, etc. She's rarely able to leave home at all. Arachnoiditis causes severe nerve pain, and she has tremors when she tries to hold something. She had questions about wheelchair lifts and vans, and we compared a lot of notes about household assistance (from husbands--hers also helps a lot), how our children cope, and how people react. I'm glad that we both will have each other to talk to.

Friday, September 25, 2009

Staying Gluten Free

Gluten-free is not as difficult as one would think--definitely not as difficult as ten years ago, when I was first diagnosed with wheat allergy and threw in the towel pretty quickly. Dealing with the symptoms from eating wheat was easier than dealing with lack of alternate products; and what there was tasted "dog foody." You do get used to it quickly, definitely within thirty days, though I advise stocking up on some items if you don't have a specialty grocery close. Even WalMart now carries gluten free pasta at a lower price than specialty stores, several gluten free cereals, and the new Betty Crocker mixes. Another local grocery carries Bob's Red Mill flour and mixes. Items such as pancakes and muffins can be made in advance and frozen to save time. I do miss the occasional bagel--the alternates I tried were awful, but most everything else is great. Some products are far better. Some great finds: Mary's "Gone" Crackers, Glutino breakfast bars and plain and vegetable crackers (great with hummus or cheese), Erewhon rice cereal, Betty Crocker cake mix for birthday or company. Bob's Red Mill website carries a lot of recipes, and you can also use standard recipes, substituting the GF flour and add xanthum gum (sold in a package) for binding. The pizza crust we made was superb. I don't eat rolls/breads except sandwich bread for sandwiches or toast--I miss eating these occasionally but had mostly been skipping these anyway to save calories. We have made muffins--pumpkin and blueberry. We once made cornbread, but I need to find another recipe. Oh, yeah--Tasty Bites Indian Food for something fast. The tikka masala is pretty good, and GF.

I have remained gluten-free for three months, with two small exceptions. I accidentally ingested some in artificial crab meat and was sick in thirty minutes; my daughter ate the same food but was not sick. I researched the ingredients on the web (the ingredients for artificial crab meat are not listed!), and yep, wheat. Then a week and a half ago, frustrated by time constraints, sharing the van, and trying to visit my grandfather before picking up my son for a long appointment and convincing myself this was just a big bother, I ate some regular pasta and a roll. Result: major psoriasis outbreak, nail pitting, a little more hair loss. I am allergic to wheat but ate it anyway for many years (just 2 on a 4 point scale, mild). Regardless of whether gluten causes my health problems, wheat clearly contributes. To go wheat free, one must use gluten free products. So I'm staying on this diet. I wish I had known this years ago as a teen with self esteem issues (and severe itching) from psoriasis.

I don't regret my "experiment," as now I know for sure. Some of my GI issues have been a lot better too--whether that relief is from eliminating wheat or gluten, I don't know, but either way, I'm glad to have some relief in that regard.

With careful food shopping, we've been saving so much on other foods that I don't mind the extra we're spending here. My arthritis pain has often been better--to the point that I haven't scheduled an appointment with the wheelchair seating specialist because my scooter is doing its job again! I won't hesitate if I get another bad flare at this point (as in May and June), but for now...I will keep my fingers crossed. I can't sit in it all day, but I am not in agony just from going to one of the kids' activities and back home. My thoracic spine is killing me, but that is my own fault for moving improperly--well, it wasn't intentional to hurt myself, but hopefully this will go away soon.

Good news: I was told after my son's recent OT evaluation that he's now average or above average in most motor skills, so does not need OT now. That is good since I was worried about him missing school or his grades dropping from being too tired from doing one more thing a few times a week. He does need some downtime! He does not need to see the autism specialist for another year.

Bird's got an after-school orchestra party and her first volleyball scrimmage tonight. 3 of the girls she already knows, and I think this team will work much better! It wasn't just the disability issues with the other team--some of the players would chide others for missing a volley (causing my daughter to lose concentration and not do as well) and one repeatedly argued with the ref!--a 10-year-old, almost causing us to have to forfeit a game. I think we've got a sweet bunch.

I've actually been spending less time at my grandparents' this week--they're having so many people drop by that they're worn out from the company. I think my grandmother feels she needs to entertain people, while she really needs to go nap. She normally needs to, and she's been under a lot of stress. We've sent over several meals and kept visits short. My grandfather actually eats pretty good meals at dinner and we've been trying to make some of the things he really likes--salmon, hamburgers, spaghetti. Not culinary masterpieces, but food he enjoys and has asked about.

Monday, September 21, 2009

"Help Crippled Children" ??

On Saturday my family escaped to a large local craft festival for a few hours before visiting my husband's grandmother and making two dinners simultaneously, one to send over to my grandparents, aunt, uncle, and cousin, and one for us and my parents and sister here. After navigating some sidewalks with some terrifyingly steep dropoffs and finally finding a panic-inducing series of steep ramps to descend into the square, we found all kinds of lovely crafts and handmade items. We can't make purchases right now, but we could feast our eyes and enjoy being out after some recent bad weather and too much time in--there were dichronic glass necklaces, candles that smelled like sugar cookies or chocolate, some nice silk cosmetic bags for travel, reversible bags and aprons, beautiful scarves--any of which would make wonderful gifts. We did get some kettle corn for the kids. It was good to be out for a while--not so long I put myself in bad pain, though I definitely had to use the scooter in the kitchen later. I keep hoping to run into someone from a very local assistance dog organization (I think they're housed downtown there) but haven't yet.

As we made our way through the booths, we saw a couple of Shriners with buckets collecting money. I was shocked that the sign said, "Help Crippled Children." I'm pretty sure the shock registered on my face. The kids asked questions, so I explained. Later, at multiple intersections, we saw other Shriners collecting--these buckets read "Help Crippled and Burned Children." I have to say when I was a patient, I never considered myself crippled (even when I used a wheelchair, walker, crutches, and cane over time) and am not sure how my son feels if/when he makes the connection between this group and the hospital he will go to for evaluation. I have referred to myself jokingly an adult as a "crip" or "angry gimp." But honestly, I feel confused by but don't really like the term "crippled" in this particular context. It does make it more clear what kind of disabilities they treat (orthopedic). But do other people then pick it up? I just felt a stab of pain about it. To me they are trying to evoke pity with their particular use of the term. Does using "crippled" rather than "disabled" net them more funds?

As a friend who is doing a nursing rotation at the local Shriner's hospital pointed out, not only is the medical care free, but insurance does not dictate that patients must leave before they are ready, turn down necessary procedures, and nurses don't have to over-monitor medical supplies. All of these things are good. Co-pays and coinsurance even for those who have insurance can be financially devastating for people whose children require multiple surgeries or frequent casting or bracing, as can the loss of one parent's income to caregiving, home and vehicle modifications, and costs that insurance will not pay for at all (minor to major DME and personalized equipment needs, nursing care, etc.). Yet a part of me as a child felt "weird" about Shriner's versus my orthopedic visits, like I and others were set apart or marked in some way as different, pitiable or wrong. Perhaps my impression now is tinged by my pre-teen resistance to other people messing with my body, not feeling I had control over what happened within my body or what happened to it.

The work they do is good, and maybe I'm overthinking this, but I just didn't like it as a child when people would treat me with pity rather than as an equal--I don't like it now, either.

Tuesday, September 15, 2009

Hospice Care for Grandfather

My grandfather finally got the results of the needle biopsy back yesterday: lung cancer. And yesterday finally got the tumors on his elbow/arm biopsied: metastasized lung cancer. He'd had x-rays, sono, all kinds of stuff, and had been told those additional tumors were just hematomas from sitting in his chair. I don't think so--his elbow had been double its normal size, and he doesn't sit that still. I think we've all known where this was headed when he started coughing up blood and had a spot on his lung. He's already developed a new spot on his head.

So he's been told he has about two months to live. He's been told he will have to move into a nursing home because of the care required, but none of us, not one, want that to happen and are trying to find out more information about getting hospice care at home. A lot can be done by all of us in shifts, though we can't administer IV medication when that time comes and stronger family members will have to help with restroom needs.

I don't like any of this and am in a probably immature "why do people have to die?" frame of mind. My dad disowned me when I was in college; he was so violent that I had to call the police and was afraid he would kill me. My grandparents acted as my parents for many years, and I feel very close to them. They gave me a lot of support, came to visit me in college and graduate school, gave me a lot of encouragement, invited me over for to visit them during the holidays when my own parents wouldn't, celebrated my birthday when no one else did, welcomed my daughter--on my grandmother's birthday, no less. I don't know what else to say except I am not sure how I would have continued living at times without their support.

I'm trying to shore up for what's to come. And realizing that I've got to keep things as normal as possible while balancing that with not shielding my children or making them afraid. My son has 2 grades that are 89's on his progress report, but I think that would have been higher without all the shuttling around after school and me being gone some in the evenings or weekends. This is quite a different problem from first grade, where he was failing classes. I had been tutoring him in math, and his average is now a 99 there. He's picked up violin this year too at school but it's hard to get him to practice when something is unfamiliar. At first the positioning and plucking were difficult but he practiced readily once he got that down; now he's working with the bow rather than just plucking. I think he's such a perfectionist he doesn't like mistake after mistake as he learns. It is neat to see him master this, though, getting better after 15 minutes of trying.

I am feeling sick at my stomach about the job issue. The interviews did not pan out, though it really looked like one would. He was told they would call back for one more interview, and that one had gone well--but they never did. Now there are very few jobs for him to apply to, though there was a wave of them about six to eight weeks ago.

I hope everything improves soon.

Monday, September 14, 2009

*Using* Gates' Disability to Discredit Obama

Today's post by Lene of The Seated View confronts the comparisons people are making between Hitler and Obama. Reading her post, I am reminded of an email my tea-party giving attorney "friend" sent me, using a photograph of Gates navigating some steps with his cane while holding onto the arm of another person; Obama is a step ahead and looking forward. I ignored the email at the time, though I realize I missed an opportunity to educate (her) and to share this with others. Conservatives have certainly never as individuals or as a collective advocated for our rights and needs. Here's the email:

July 31, 2009
Obama's revealing body language (updated and expanded))
Thomas Lifson
This picture truly is worth at least a thousand words.

I am stunned that the official White House Blog published this picture and that it is in the public domain. The body language is most revealing.

Sergeant Crowley, the sole class act in this trio, helps the handicapped Professor Gates down the stairs, while Barack Obama, heedless of the infirmities of his friend and fellow victim of self-defined racial profiling, strides ahead on his own. So who is compassionate? And who is so self-involved and arrogant that he is oblivious?

In my own dealings with the wealthy and powerful, I have always found that the way to quickly capture the moral essence of a person is to watch how they treat those who are less powerful. Do they understand that the others are also human beings with feelings? Especially when they think nobody is looking.

Hat tip: Rick Richman Update from Thomas Lifson:
I think this photo constitutes another major Obama blunder.

As some AT commentators point out, this picture becomes a metaphor for ObamaCare. The elderly are left in the back, with only the kindness of the Crowleys of the world, the stand up guys, to depend on. The government has other priorities.

One of the major subtexts of the health care debate involves the public's fear of indifferent, powerful bureaucrats ruling their lives. It is one thing to wait in line at the DMV to find out which other line you should wait in, in order to begin the process of waiting for multiple bureaucrats to go through the motions of processing your request. I have spent entire afternoons going through this process.

But when we get to health care, waiting often means enduring pain and dysfunction longer than necessary, sometimes a worsening of the condition, and sometimes death.

That's why I think this image will have genuine resonance. It captures something that older Americans in particular can relate to. The President presses ahead with a program that will tell them to take painkillers instead of getting that artificial hip.

At every stage of the entire Gates affair, Obama has provided a revealing tell. The "acted stupidly" blunder revealed that he automatically blames the police and thinks they really are stupid to begin with. It didn't trigger a single alarm bell in his mind as he figured out what to say.

Then, the non-apology apology revealed an arrogant man who
cannot do what honest people do: admit it when they make a mistake.

Now at stage three, the beer photo op looked OK. It didn't turn into a disaster.

But then in a small moment that nobody in the White House had the brains to understand, Obama goes and send a body language message like this. I think he is going to get deeper and deeper into trouble. He is no longer repeating the familiar scripts dreamed up for the campaign. He was a master performer.

But when he goes improv, as a president must do, he lets his true character show. This helps widen the level of doubt that Obama is the same guy a majority voted for. Those doubts can only grow.

Andrew McCarthy has assembled an overwhelming case that Obama has lied about who he is. I predict that more and more Americans will become open to the argument that they have been had by a sophisticated and ruthless effort to foist a phony on America. Page Printed from: http://www.americanthinker.com/blog/2009/07/obamas_revealing_body_language.html
at July 31, 2009 - 04:59:44 PM EDT
I have never known a conservative who is not a relative or a very close friend to offer me assistance in the ways this email suggests, not that we know if Gates needs or wants help beyond what he is getting; in fact, I've had some conservatives abandon me mid-field trip and leave me in a dangerous situation. Most conservatives never offer me help where I very obviously need it (such as waiting for a door or not being able to reach overhead; someone also let a glass door slam on me in my scooter last weekend rather than continue to hold it), or even in their own homes. The woman who sent me this email certainly has never done anything to allow me accessibility in her home or more comfort within it, and in fact chooses to make fun of those who do request accommodations (see the tea party post). Conservatives do not care about accessibility either privately or publicly, whether I can attend events or must stay home. They do not care about my health or how I am doing. I have been told by this person that she always changes the subject (which I've noticed) when it's about "health" (read "disability"). This common kind of attitude is dismissive of others' experiences and the important social and legislative aspects of disability that apply to a lot of people. No wonder people don't understand why my friend who's been through chemo for cancer just after surviving a near-fatal heart infection can't make it to events or help as much and don't understand the day after she's had chemo why she's sick. No wonder this woman can make such conclusions about other people and about universal health care, also deciding, in her words, that I feel sorry for myself. The irony here is that she obviously expects people to feel sorry for Gates.

My husband and daughter both said "no" and looked shocked when I asked them if I ever felt sorry for myself. People who have not known me from childhood don't realize that none of this is new for me; I found myself having to comfort other people about wheelchair/scooter use, which was really strange since it didn't bother me. I do get tired of being repeatedly cursed at in public (especially in front of the kids), lack of access in buildings, refusal to provide service, etc., but observing and commenting on these things is not self-victimization--these issues affect all disabled people and should change. These things are what make disability difficult, not the actual health issues. When one person asked, "why you?", I've responded, "why not me?" While I'd gladly accept better health, I am not going to waste energies on wishing for the impossible that can be put to better use.

More Thoughts on Advance Directives

Wisely, my grandmother never showed her medical power of attorney or my grandfather's advance directive to the hospital, recognizing that didn't need to be done yet. Had this been given to the doctor before his biopsy, he would now not be with us, even though intubation would have been temporary. I am saying this to people with disabilities now: if you give staff an advance directive saying you don't want to be revived if you're deemed to be terminal, that may end your life years and years before your time, even for younger people.

I was surprised that my grandfather had said, "no tubes," including trach, before, because a tracheostomy is not a fate worse than death. It is a shame to me that end-stage COPD patients are not told this is where they're headed and generally a decision will have to be made. When they are told about trachs, they're not given much information about it. I looked up and printed information for my grandmother on hospice (including at-home hospice), the forms of ventilation, pictures of what a trach looks like (on my friend), and how it works/the care that's needed. While I understood where things were headed, that doesn't mean they can hear it from me or would think I would understand.

I am equally surprised that he changed his mind when he was in the moment. My aunt kept saying over and over that he had always said he didn't want "tubes," overlooking what he was saying at the time. She also did not think he should be informed about the choice or asked--which is just not ethical. I think her unconscious motivation is that she's doing a lot of the caregiving and would continue to do so and she is exhausted, exhausted by sitting in the ICU with my grandmother 11 hours a day, driving my uncle to and from work and taking care of some household needs when she's not.

The doctor also asked my grandmother if she was sure, and she told the doctor, "ask him," and pointed to my grandfather, and he did. I think in ICU they have so many patients who cannot speak for themselves that sometimes doctors and nurses forget when they can--and that's terrible. I can see that someone's rights can disappear in an instant just because it's more difficult for them to communicate.

Thanks to Yanub and OSM for your comments the other night--they were extremely helpful. You were right; why were they discussing what he said in his living will when he was still lucid? Why did the nurse tell my grandmother she had some difficult decisions to make when my grandfather could speak (albeit he had difficulty making himself understood on that oxygen mask and with his dentures slipping, but he could communicate that much).

I also don't understand why physicians don't communicate more clearly about trachs, how they work, and the care required. I imagine that many more people might opt in if they understood, while others might choose otherwise. I had to explain to my sister later why he was making this decision because she did not understand and I could sense that she was aghast when my mother phoned her. To her, if not to most, life support means indefinite survival on a respirator in the hospital while unconscious.

Most of all what surprises me is how simple many advance directives are--a couple of yes/no check boxes only on my grandparents'. My own decision making would be a lot more complex and have a lot more conditionals than that. Here is a sample of an advance directive from the American Academy of Family Physicians that has a few more choices than some advance directives:
Check the language on artificial nutrition/hydration, for example:

I do not want artificial nutrition and hydration started if they would be the main treatments keeping me alive. If artificial nutrition and hydration are started, I want them stopped.

I don't know that I would refuse a feeding tube or rehydration if I could not take food in by other means, though I'd probably not want that not be done if I were not conscious or aware, having to be tied down, and would not live long. But dehydration or starvation would be horrible ways to go. There are children and adults walking around with feeding tubes, so I can't say I'd want to end life on that basis alone. I've seen someone express that she would, though. I wouldn't want to be intubated indefinitely but I really don't think that I'd turn down a trach.

There's just so much gray area between those fill-in-the-blanks! And what do people consider terminal, and at what point?

Sunday, September 13, 2009

Disabled Scooter Users Ticketed?

It amazes me when local or state legislators and individual business owners think they can bypass federal legislation such as ADA and prohibit people from public access. Mobility scooters and wheelchairs that fit certain dimensions are both covered by ADA (and most do fit; I gather the reason others don't is not exclusionary but simply that they won't have the same tight turning radius, there's a limit to what will fit on a bus lift or what can be lifted, etc.).

But in Florida, it's illegal to ride scooters on the street or sidewalk, though Segways are allowed. And now one man has been ticketed:
While the author suggests that such tickets should be banned, a sheriff's department spokeswoman said officers can't be instructed not to enforce laws. Discrimination such as this ticket is already banned under ADA, which allows people with disabilities public access. ADA is a law that is in effect in Sarasota. It's a law in place to prevent such discrimination, and simply making more laws in an attempt to bypass it is not legal. It's the Florida lawmakers and police officers who are breaking the law, not the scooter user.

Saturday, September 12, 2009

Things Going Better Again

To my surprise (shock?), my grandfather was back off the oxygen mask this morning, eating fine on his own, and talking well. So he was able to say exactly what he wanted and didn't want in very clear terms. This makes it much easier for everyone. What annoys me is that the nurse wrote in his chart last night that he did not want to be intubated again at all and that is absolutely untrue. They are considering a trach and hospice, intubation if needed for a while again briefly. The nurse had no right to do that, and no one said that to her.

We may be on this roller coaster a while until a point of stasis is achieved or if he passes away soon. He has strong willpower! That's good--it's gotten him very far in his life and allowed him to be healthy and strong as long as possible.

Anyway, it is good that he can express what he wants very clearly and others don't have to make that decision right now. My grandmother is fine with his decision, and that's what counts.

My grandmother is wearing herself down, insisting on being at the hospital 15 hours a day.

Now my husband's grandmother was hospitalized this morning with COPD too, at a different hospital, but not in ICU. Everything at once!

Friday, September 11, 2009

Difficult Decisions

My grandfather has taken a turn for the worse again today and is back on some kind of pressurized oxygen mask rather than just the cannula. He is alert and as intelligent as always in his life. He has a living will and did not want to be intubated at the end of his life, but right now he's conscious and cannot breathe well at all. His O2 rate drops to under 90% within 30 seconds when it's removed briefly for him to try to eat a bite. If an emergency happens, does he want to be intubated again? Right now, his answer is yes. That's what he told my grandmother tonight. Others think his living will should stand as is, for him to go naturally, even if that's not what he's currently saying. I'm staying out of this and leaving this to my grandmother and his children and him. I thought the will stood as it was. I feel torn several directions.

I can't say he's irrational at all. He is clear-headed. Honestly, I understand. He loves his family and loves living.

Everything changes when people are in medical crisis rather than hypothesizing about it. I'm told Elizabeth Kubler Ross made some changes to her beliefs at the end of her life. Yes, he cannot live indefinitely but he loves life. How when someone can't breathe can you tell them no, that they won't be intubated again?

Another option is that he could get a tracheostomy and be put in hospice at home. I don't know that he would survive that procedure, would survive full sedation--he's not been able to have needed surgeries because of the risks to him. My friend lives with a tracheostomy, but she is much younger, my age.

This is heartbreaking. It feels like killing someone to deny a trach. People can live with them, though I don't know how much time he'd have without. He lives at home with my grandmother and uncle and is not faded at all, sharp and bright. I don't know what to say, what to think right now. I know disability is okay. I know this. I know trachs (as opposed to intubation where your hands are tied down and you can't speak) are okay. But what would that procedure do to him if a needle biopsy did this? Not giving him air feels like murder. And yet if a trach didn't go well I wouldn't want him to be in agony from that.

He loves my son dearly--I am told if he has a favorite that it's my son--and he hadn't been able to see him in a few weeks. I wish they could see each other again, just once, but those nurses are being strict about no under-12. Yes, my daughter's been in to see him many times. She's okay with this, really okay with this, has been holding his hand.

Nothing about this is easy. I thought the outcomes and decisions would be clearer for everyone. This big grayness is awful. I don't mean to sound like I'm overly distraught--while I've done some crying, I am thinking maybe too much right now. I'm also hating it that my pain has been so high (after a few really good days) to allow me to be at the hospital as much as I'd like to be--for my grandmother more than anything.

Note: I will make myself available tomorrow morning, when they meet together to make this decision, to give an informed lay response about trachs, hospice, etc. if they have questions (I was asked a few).

Umm, oh yeah. He called my grandmother late last night after visiting hours (a nurse can bring a phone in) saying he'd just been given the wrong medicine and felt really funny/wrong and that staff were shouting at each other about it at the end of the hall. I don't know if that's what it was really about or no, and the feeling may or may not have had anything to do with the medicine. But that's when he took a turn for the worse. God, I wish for clarity in all of this. This sucks.

Tuesday, September 8, 2009

crap, offline for a while

My grandmother just called from the ER about my grandfather; today's procedure didn't go well and resulted in a medical emergency. Have to get my uncle when he's off work. Anticipating being offline for a while.

Update: Thanks for the good wishes, am hoping to sleep tonight. To everyone's surprise, not only did the pneumothorax resolve, but he was alert this morning and they were able to wean him off the ventilator and extubate him (that's a needle biopsy gone very wrong, where the patient comes in fine and ends up on a respirator a few minutes later). He ate all the broth and popsicles and jello for lunch and fed himself most of his supper. Yesterday things looked so bad we didn't anticipate him waking again. Needless to say we're glad he's alert and comfortable. This isn't the way he wanted to go--he didn't want all these interventions and wants to live out the remainder of his days at home. He only went in for a fast needle biopsy!, and they said they wouldn't have done it if the risks had been explained in advance rather than right before they wheeled him off after his hearing aids had been removed. At this point, if he has cancer, he has cancer but not much could be done anyway.

I spent last night at my grandmother's so I could have her there first thing this morning, didn't sleep last night, was at the hospital most of the day, *pain,* am going to bed... will talk to everyone soon.

View from a Wheelchair

Nancy Mairs strikes me as much nicer than me or else she sits much taller on a better cushion--I generally find myself at butt or crotch level with the world rather than waist high, which can be unpleasant and awkward. (I know others have made this observation, but I also realized that as soon as I started using a scooter, fresh from reading one of her essays on her website--"Wait, I'm lower than that!"). People generally seem not to recognize this and place themselves too close. Wheelchair Kamikaze points this out in his great videos of Manhattan; if you've not seen them, they're very enjoyable. In a recent post (go to September 2), Lene Andersen of the Seated View shows how crowds and street fairs can be difficult for us to enjoy when there's not good planning. In addition, one of her favorite restaurants, which is usually accessible, even blocked off the entire sidewalk for additional seating and put a temporary ramp into the street. People with disabilities are thus deliberately excluded from the restaurant.

Even when we can get access or a good view, people often step around us and then directly in front of us, blocking our line of sight. My husband often wants to know whether I saw something or other while we were walking, but the answer is generally no, that I don't see a lot until I stop. I am generally busy navigating carefully through people and paying attention to the sidewalk or bumpy ground unless I'm on very familiar turf, the path is reasonably smooth, and it's not crowded. This is one reason of many that we like to go places at times that are less likely to be crowded.

Monday, September 7, 2009

Automatic Page Turner

I don't know if this product would be helpful to other people, but I've posted a link below for an automatic page turner for books. With this automatic page turner, books are held open hands-free and pages can be turned with the push of a button or with a sip-and-puff or foot pedal. For those who have trouble holding a book, keeping it open, and turning pages (even bookholders require frequent repositioning), this may be of some use. I have not tried this product myself but researched for one before I stopped working.

See http://www.pageflip.com/

It looks like someone must adjust it every 20 pages read, but still, it does give some additional independence and allow books to be read where they can't. One of my friends has had to give up reading everything but electronic texts on the computer--she cannot afford a Kindle or books for it and cannot hold books or turn pages.

Sunday, September 6, 2009

Thoughts on a Tea Party

Photograph publically available on the web. There's another full page of it which I'm just too embarrassed to share.

This image is from a murder mystery tea party. This page from the online photo album features a character named Barbara, complete with her pretend neck brace, complaints about her wheelchair, etc., while others point out that she's a hypochondriac and a hypocrite (or is at least perceived to be) since she can go swimming, pole dancing, and has been caught skating. Thoughts? I'm interested since people don't understand why I, an intermittent wheelchair user, am sensitive about it (actually some do, others don't). Yes, these are people I know. The young woman in front is a newly minted PhD from my school, the woman hosting is a lawyer whom I've known for sixteen years, and my mother-in-law also attended and participated. The lawyer is also one of my mother-in-law's two best friends.

You can click the image to make it larger, though the text is still difficult to read. The caption reads: "Barbara looked so ill, we wondered if she would survive the party." And the relevant commentary (the characters are accusing each other of murder) reads:
Dear Big Feather Betty,

Shakespeare also said to kill all the lawyers. Methinks this to be a good idea. Your insulting words are to me "like the breath of an unfee'd lawyer".

You know I am in very delicate health and must watch exposure to every sort of contamination and upsetting situations. I also try to get the proper amount of exercise and pole dancing is an excellent form of exercise. I go to the facility at which Rachel saw me Sat. night for the pole. I breathe through my mouth, a technique I learned from old Marilyn Monroe films, while I exercise there so I don't inhale the smoke. Barbara

Rachel, Do you have handicap parking in front of your house? I require a special parking place due to my frailties.

Cut the crap! I saw you at the skate park last week and my PI took the following footage, and that was before Rachel saw you pole dancing. Bring your motorized wheel chair if you can't walk to the door! I believe Rachel's sidewalk is safer than the skate park...

Betty, I saw BABBLING BARBARA at the Water Park on Thursday trying to get someone to take her in as they would not let her come in a motorized wheelchair. She was drooling and whinnnning all over the gate. I think if she needs a handicap parking she should park at the library and motor on over, just give herself enough time as we can't wait for her when it's time to sipppp the tea. I am looking forward to this party and I know I don't have to sit next to the babbling whinning Barb.
As loving as always, AGNES

Truly I can't help but see it as a personal attack. While my sisters-in-law don't think so, they (unlike Rachel and my mother-in-law) actually understand me and have been my friends (one of them since childhood). My mother-in-law, in contrast, has been mean for the past two full years. The more ill I am, the more mean she is. There has been a marked change in our relationship since I've become more disabled. She sees me as lazy and thinks I just need to be more positive, to use better posture and to exercise more. Her own daughters have told me she will never understand my health issues. Ironically, she has multiple but mostly more minor medical problems herself. She doesn't understand intermittent disability or changing pain levels. She doesn't understand why I need a scooter out but not at her house (I actually do, but can't get it into her house).

Because of my in-laws' continuing criticism, I recently finally told my in-laws, at my husband's suggestion, that I want privacy about my health and don't want to discuss it with them.

Even if this is from a boxed game, I still find it highly insensitive and reprehensible. All of the other characters just had a photo and a short phrase to describe them, none of this at all.