Vague Wisdom

Last Friday I had to go to Stanford for the drug trial. Which made it an early morning for me (6 AM). We got there on time. The visit entails several tests each time, but the tests aren't always the same each time. I was told there would be a blood test. Which is never my favorite, although I'm a lot better about getting my blood drawn now than I was two years ago. I didn't realize there would be several blood tests. They use these to monitor how my body metabolizes the drug. I usually need a baseline draw. Then I take my medication and they take blood again after an hour. Then another an hour later. A fourth a couple hours after that and then another two hours after that. Unfortunately I missed the baseline because the woman facilitating the test forgot I needed one and gave me my meds before the first blood draw. Bad news is they don't get some of the data they would like. The good news is I only had to get stuck four times rather than five. They also gave me an EKG which isn't a big deal, but I missed my scheduled check because of the pandemic.

The Stanford visit went pretty well. I did run into some trouble reentering the hospital. I had gone up to begin my tests with no difficulty that morning. In the middle of my tests, we went outside to enjoy the weather for awhile. On my return the guards said I needed to wear a particular mask that they handed me. Normally, this wouldn't be an issue, but the guards addressed all their comments and questions to Carol even though I was the one not complying. I had a mask on that I had been allowed to use when I first arrived at the hospital, but these guards were more insistent I used the mask they had given me. Look, I know they were doing their jobs and I'm sure some people give them trouble. My issue was they were not addressing their concerns to me. This is a sore spot for me. So after they had explained themselves to Carol. I said if you have a problem with me. Talk to me. He never really acknowledged my request. I called our test facilitator and she talked to them. Eventually I put on the mask they wanted. Which was difficult because I drive my wheelchair with my mouth and the mask quickly moves up my face as I am driving and eventually covers my eyes. So I drove upstairs having to stop every 5 feet or so to have someone pull the mask down so I could see.

I don't know if anyone is watching Fear the Walking Dead, but I really loved this week's episode and it hardly had anything to do with zombies.

I'm terrified of the election, so I signed up for a reading of A Midsummer Nights Dream. I'm reading Theseus and now I'm struggling with performance anxiety. I'm not completely sure what is better. Well, I hope the next time you read this blog I will be happy with my performance and relieved by the results of our election.*Fingers crossed*

And hey, let's be really Zen about this race. I know we may want to know the results as soon as possible, but let's not feed into President Cheeto's "strategy". We know there's always a couple races (and in fact most races) that don't get resolved until days after November 3 and that is completely normal. It's more important to count everyone's vote than how quickly we count.

I've been disabled all my life. I have not always known why. I don't mean in that, "Why me, Lord?" I mean I didn't have a diagnosis. Not for lack of trying, especially in the beginning. I went through all kinds of tests and back then doctor's were very... let's say "creative" in testing nerves and muscles. No MRI's then either. A test called the nerve conductivity test, takes a special place in my nightmares to this day. Add to this the fact that the hospital we could afford was a teaching hospital. I didn't visit my doctor once without a gang of student doctors poking and prodding me without so much as a how do you do. Then there were all the conversations about my medical health being had all around me, but no one actually talking to me. All of them assuming that I couldn't follow the conversation when I always could. All these things made the medical profession difficult for me to deal with. It's taken a while and to be honest, some big changes in how medical staff are trained to deal with patients to make it even possible for me to have things like a regular doctor.

So my relationship with healthcare is not good and I have largely avoided hospitals including neuro-muscular clinics that might know a little bit more about my disability than a general practitioner. After my pneumonia four or five years ago. Concerns about how my disability was progressing started getting more important. And with a lot of internal struggle I finally got myself to the MD/ALS clinic at Stanford to see what they could tell me. I dreaded it. I was pretty sure there was no good news coming from the clinic, but I am a grown up (sort of) and feel pretty good about this step.

I went to the clinic once and did all right. The clinic doctor asked me whether I wanted to get the genetic test to confirm my diagnosis. I'm old enough that when I got diagnosed there was not a test. Diagnosis was largely a collection of symptoms that suggested I might have this or that disability. I'd been given a diagnosis at 16 but had really done nothing about getting more information. So I said sure let's get the test. They took my blood and I just got a phone call from the clinic a day or two ago. In the time between taking the blood and getting the results, I did feel odd. Not worried or anything. Certainly nothing like the one HIV scare I went through, but just odd. I thought to myself what if I don't have what I have? What would that mean? So very much of my life is a part of my identity as a person with a disability. It's not like I'm not disabled. I clearly am. Whether or not it's the diagnosis I think it is. Anyway, like I said, I received a call recently from the doctor that confirmed that I have what I always thought I have. Nothing has changed, no real treatment. Certainly no cure, but it definitely feels more real. That might not be the right word, more solid, more sure? In another way it makes me kind of laugh. When a doctor calls you on the phone in a very serious voice and tells you that your diagnosis (the one you've had for 40+ years) has been confirmed. It isn't exactly big news anymore, but still it's a part of me now. I know it is part of me and not just a possible part of me.

This article by Marilyn Golden gets to some of what I worry about when it comes to legalizing assisted suicide.

Reposted from gramina:

I’m walking to raise money for the Alzheimer’s Association, http://alz.org. You can see my personal fundraising page at http://act.alz.org/goto/michelecox.

When my mother was diagnosed with Alzheimer’s, it was the Alzheimer’s Association that gave us detailed information on what to expect, and it’s the Alzheimer’s Association that started the Safe Return program (with Medic Alert), so that she and her husband had matching bracelets and if she wandered, she could be found more quickly. They gave information and help and support to our family when we really needed it.

They also fund research into ways to prevent, ameliorate, or cure Alzheimer’s disease. Since 1982, alz.org — the world’s largest nonprofit funder of Alzheimer’s research — has committed $292 million to more than 2,000 grant proposals.

My mother died of Alzheimer’s disease in May of 2012.

My family tends to be long-lived; I should have had another 20 years of my mother’s wit, compassion, intelligence, insight, and love. Instead, Alzheimer’s stole the last ten years of my mother’s life from her and from her husband, from me, from my sister, and from everyone who knew her.

No one should have to go through that.

By 2050, though, as many as sixteen million people are expected to have Alzheimer’s disease. That’s not just sixteen million lives cut short, or sixteen million minds deprived of their vision, clarity, power, and creativity. It’s sixteen million times all the children, partners, lovers, friends, and caregivers whose lives are catastrophically disrupted, whose hopes and dreams and expectations for their own and their loved one’s future are broken and betrayed.

Please help me help the Alzheimer’s Association continue to fund research and support patients and families. If you can donate, that’s wonderful — the smallest amounts add up faster than you would believe. If you can’t donate, please feel free to signal boost — I appreciate it a lot.

Thank you, so very, very much.

Partly because I'm a little worried about the pilot program to put those on Medi-Medi into a managed care program and partly because my wheelchair is getting pretty old, I am beginning the process of getting a new power wheelchair. It begins with getting a prescription from my doctor so I can get an appointment with an occupational therapist who evaluates what I need. Got the prescription, check. Prescription faxed from my doctor to the durable medical equipment guy (in my case Wheelchairs of Berkeley), check!

At this point it was my understanding that Wheelchairs of Berkeley would contact the Occupational Therapist they work with to give me possible times to meet. Instead I just got off the phone with Wheelchairs of Berkeley who notified me that I had an appointment at 3 o'clock on the 23rd. Apparently my schedule isn't really important. I suppose I could've insisted on rescheduling, but I do want to get this over with, so I will cancel my therapy appointment to go to the OT. Not too patronizing they would assume that I would just make myself available. I'm probably annoyed more than I should be, but these or the little things that make my life so full.

Yesterday I went to see Watt, a play by Samuel Beckett being performed at the Zellerbach Playhouse with wild_irises and waywardcats. Beckett happens to be a favorite playwright of mine, so I was thrilled to go. Although short, the play was well done and I enjoyed it. I had previously arranged with loracs to pick me up around 10:15 thinking that the play would be longer. Before the play began, we called loracs to let her know that I would need to be picked up earlier, but all we got was voice mail. After the play, we all went to Bancroft where I was to be picked up. Last night was amazingly cold and after waiting for a while, we decided to head for Smart Alec’s (where we had dinner before the show) and shelter.

( Now it gets embarassing )

Woke up this morning with cellulitis again. I got right on my antibiotics and I'm feeling better, but pretty exhausted. I was wondering why I was almost crying because I couldn't finish a quest in Asheron's Call. I tend to get emotional when I have cellulitis.

I got a notification from the county late last week that my attendant would be terminated unless she finished the IHSS Provider Enrollment. Which basically entails getting fingerprinted, background check, sitting through a training film (which had very little information about the actual job. But had lots of threats if one were to misrepresent hours worked.) And filling out a few forms. All of which had been done last year, but the notification may sound like to clear this up before the end of the month or my checks would discontinue. Calling IHSS was an adventure in itself. Talk about voicemail hell I've never worked so hard to make a phone call before. Anyway, turns out that we were fine, but the county had sent this threatening letter to everyone who received IHSS Whether or Not They Already Completed Provider Enrollment. Ain't that special?

Friends are coming over today I will probably watch them all help Carol pack up Betty's place in preparation for installing a new floor. I'm actually looking forward to a low key day with not demanding company. I hope you all have had a good holiday.

The most recent episode of Glee, the new Fox television show about a struggling Glee Club, has stirred up some controversy in the disability community. At least in my corner of the disability community. You see a continuing character on the show is a wheelchair user, at least the character is a wheelchair user. The actor playing this part is able-bodied.

( Possible spoilers ahead )

Hello,

I just thought I'd drop a note and let everyone know I'm still alive. I have been particularly depressed the last few weeks. I'm coping and what energy I do have has been going into fighting California Gov. Schwarzenegger's proposed ( budget cuts )

Good news: I have a new 500 GB Hard drive!

Bad news: I'm not sure when I'll get it hooked up.

Good news: I have a good new morning attendant! I'd say great, but its early (one week) and it feels a little direspectful to Stacy to say great yet.

Bad news: I have Cellulitis again.

Good news: Anti-biotics in the house!