stonebender: (Default)
Today I was scheduled to get my first Spinraza treatment. I've been told
that I am the first Medicare recipient to get treated. Because of a weird
Medicare regulation, I couldn't get treated in the new building at Stanford.
Something about a requirement that wouldn't allow me to be treated more than
200 or 300 yards from the hospital. So Connie needed to schedule a room in
the old building, which wasn't familiar or really set up properly for the
lumbar puncture. I was put on a small examination table that was fairly
uncomfortable. Connie really wanted to do the puncture with me sitting up,
but I haven't been able to set up on my own since I was about 20. They had
people to help but it was ultimately decided to do the procedure with me
laying on my side. Read more... )
stonebender: (Default)
Hi All,
I will be posting this to lots of places, so friends and family may very well get multiple copies of this. I’m also explaining things that my family and close friends probably know already. Sorry about that, but I’m feeling like I want my friends, family and even some acquaintances to know some things about what’s going on with me in the near future. Read more... )
stonebender: (Default)
At this point it's difficult to tell whether I'm getting better or worse. I think on the whole things are improving, but never long enough to be sure. Tapering off of prednisone, I called the on-call doctor yesterday to talk some things through. I'll start using my nebulizer more frequently. Somehow I had the impression it was a bad idea to use the albuterol (for the nebulizer) with prednisone. She assures me I'm mistaken. So I'm using it about every four hours on a schedule. My breathing isn't as deep as I'd like, but it's a fairly easy breath. My breathing is a bit noisier than I would prefer. :-) People should feel free to ignore these emails. I think better out loud and since I use voice recognition some of this writing is me thinking out loud.

I should let folks know that I was off-line most of yesterday because of a technical glitch that has been resolved. Being sick with no Internet is not my idea of a good time! I hope everyone else is having a much better New Year. Thanks to all who are thinking about me. I know that I am not the best blogger/correspondent. I tend to "go silent" when I'm not feeling well. These posts are also an attempt at correcting that tendency.
stonebender: (Default)
I often write in this thing when I feel depressed or anxious. Please feel free to skip this post if you have had your fill of self-indulgent whining. I've been in relatively good health this year, but just got a cold a few days ago. So far it's been pretty mild and I hope I'm on the getting better side of it all. The cold isn't that bad, but it really brings back my panic attacks. I cough up anything and my head is telling me I'm going to choke. I'm going to die. Now I'm pretty sure that I'm overreacting, but it still feels real. I do have Xanax, which helps me get to sleep. I guess I just want to tell someone that I am worried. Don't anyone feel they need to do anything about this. Often just saying things out loud or writing them in public helps to get them in perspective. I hate being so afraid.
stonebender: (Default)
I'm back from the hospital!

What? You want details? )
stonebender: (Default)
For those who don't know, [personal profile] loracs is in the hospital with cellulitis. We thought she would be home tomorrow, but her infection is being obstinate. They are trying other antibiotics and she will be getting a CT scan to see if there's some underlining cause for the infection. She is obviously worried as am I. I've had cellulitis on countless occasions, but my infections have always responded well to antibiotics. She is at the new Kaiser Hospital in San Leandro if you would like to visit.
stonebender: (Default)
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.
stonebender: (Default)
This article by Marilyn Golden gets to some of what I worry about when it comes to legalizing assisted suicide.


Oct. 31st, 2014 12:58 pm
stonebender: (Default)
My thoughts on assisted suicide prompted by this article:

Assisted Suicide is More Dangerous...

I've been struggling with this issue for a long time now. I'm a person with a disability and I really do believe that terminally ill people should be able to decide when they want to end their lives. However, with all the talk about reducing medical costs and how much more expensive treatment is towards the end of life, there are huge financial incentives to "allow us to die with dignity". It wasn't that long ago that babies with Down's Syndrome were pushed to the back of hospital nurseries and "allowed" to die from neglect. "For their own good."

For a couple of years in college I worked as a crisis intervention counselor and I know from personal experience that many people who feel driven to suicide just need some time and perspective. This is not to diminish their pain and suffering, but I've talked to people who say they wish to kill themselves. I know, that if I could keep them on the phone long enough, they changed their minds. Sometimes suicide is not a desire to end their lives, but a desire to end their suffering with the only option they believe they have.

Too many people already think my life is a burden to me even though I love my life and the people in it. Too many people have said to me, "if I were you I would just check out." Personally I would be much more comfortable with the whole issue if I was sure that people with disabilities got the services and treatment they needed to live as full a life as possible. If that happened, then I would be more interested in talking about my "right to die."


Jul. 16th, 2011 08:50 pm
stonebender: (Default)
Went to see Linda at the hospital today. I'm actually very encouraged. When we got there she was awake and aware. She's still on the ventilator, so she couldn't speak, but she could answer yes or no questions and flip her brother the bird. :-) She is still very sick, but she is improving. They still don't know if this was caused by Valley Fever, but at this point it's kind of academic. They don't want to keep her on the ventilator going down her throat. If it stays there much longer it can cause a lot of damage to her vocal cords etc. However they think she's going to need to continue on a ventilator for a while yet. So, they need to do a tracheostomy. When my sister Cheryl talked to Linda about the possibility of a trach, Cheryl thought that Linda had shook her head no. I wasn't sure at the time how drugged up Linda was. I wasn't sure that Linda understood that the tracheostomy was temporary and she would be getting off of the ventilator as soon as her lungs were strong enough. I had several conversations with Linda about going on a ventilator, but it was always about the possibility of me going on one permanently (this was when I had pneumonia and wasn't sure if my lungs were strong enough to recover). I needed to make sure that she understood all the ramifications. So I went to see her today. I think she was mentally competent to make the decision, but because she was on medication the hospital needed someone else to sign consent for the tracheostomy. I talked to her about it. She seemed to be okay with the idea, not enthusiastic (who would be), but okay. I told her that as far as I was concerned she was the boss. If she still thought she wanted the tracheostomy, I would sign the consent. Which is what I ended up doing today. Linda has a long way to go yet, but she is getting better. Slowly, but surely.

Thank you everyone for the good wishes.

My Sister

Jul. 13th, 2011 11:56 am
stonebender: (Default)
I haven't been very communicative lately. Too much. Too fast. I'm not really through grieving for my father, then Betty dies. Another family member was operated on (everything went okay she is healing nicely) and now my sister has been in the hospital too long. She came down with pneumonia and the doctor says it may have been caused by something called Valley Fever. Something I've never heard of before. They haven't confirmed the Valley Fever yet, she most certainly has a very serious case of pneumonia. So serious that she has been on a ventilator has been kept unconscious since she went to the emergency room. I just got a phone call from the hospital saying her doctor needs to talk to a family member about our "options". I am to put it lightly freaked. I will most likely be the one to make any decisions. My sister didn't leave a power of attorney or assign anyone to speak for her when she is ill and unable to speak for herself. I say I will probably be the one to decide because, well, because there is no one else. My father is gone. My mother is a basket case (completely understandably). That leaves the kids, Cheryl the youngest who has been the one the hospital has been communicating with because she's closest. She has made it clear that she isn't up to it. My brother won't help make the decision, so there's me. Linda never made her wishes clear on what she wants in situations like this. I hope I make the right choice for her. Everyone should feel free to comment, but don't anticipate a quick reply from me. I do tend to shut down during these kinds of things. All that goes through my head lately is I was always the one that was supposed to go first.
stonebender: (Default)
I have cellulitus again. On antibiotics, but this has been a rough one, Seems like all I can do is read, watch TV, and drool. The fan on my computer died. fortunately I was given a new iPad (more on how how I came to be given one, later). I love this iPad as an ereader. I can access the Internet on it too, but its not so good at posting for me. I am enjoying reading old SF (all the stuff I can get for free.) I also downloaded a new Heinlein biography Robert A. Heinlein: In Dialogue with His Century Volume 1 (1907-1948): Learning Curve by William H. Patterson, Jr. Which I'm enjoying reading, but wouldn't recommend to anyone unless they were pretty hardcore RAH fan.
stonebender: (Default)
Have you noticed how wonderful today is? Happy Dance!

A well

Mar. 15th, 2010 11:50 am
stonebender: (Default)
I finally tried the therapy group for people with disabilities that I wrote about earlier. They are perfectly fine folk, but I don't really think it will work for me. It's basically a support group which is fine but I'm really motivated to work on some recent crap and some continuing stuff that I've been working on most of my life I think.

The facilitators of the group suggested I might get individual counseling from the Berkeley Therapy Institute which is where they work. BTI takes Medi-Cal, so it wouldn't be a huge financial burden. So on their advice I called BTI today. Turns out that they only take straight Medi-Cal. I happen to get both Medi-Cal (the state run program, called Medicaid in most other states in the US). I also get Medicare the federal program. Because I get both, BTI can't accept me as a patient.

I haven't run into this problem too often. When I first came to California I was only covered under Medi-Cal and had absolutely no trouble at all getting the care I needed and the durable medical equipment I depend on to live my life. Quite a few years ago now, my father retired. Because he retired I was required to apply for Medicare. I fought this requirement because at the time (and actually even now, unless the durable medical supplier is pretty savvy about the system) it was almost impossible to get durable medical equipment (things like wheelchairs) or have that equipment repaired when one received both Medi-Cal and Medicare. Both programs have this nifty little requirement that all other insurance must be billed for any services before Medi-Cal or Medicare will cover medical services. This results in Medi-Cal and Medicare bouncing bills from one to the other in a Chip and Dale routine. "I'll pay the bill after you." "No, no I'll pay after you!"

Since I get my wheelchair repaired at Wheelchairs of Berkeley, I haven't had much trouble with this routine, but apparently I will have trouble getting any counseling services. Very discouraging.
stonebender: (Default)
I've been feeling not at all myself for a while now. These days, I'm not exactly depressed, but I seem incapable of maintaining a positive self-image for more than an hour or so. Part of this is most certainly my sporadic consumption of my antidepressant. I don't feel like that's all of it though. Even days when things go really well for me (like today for example) I quickly feel guilty, second-guessing what I should've done or what I shouldn't. Somehow I need to figure out how to gain some perspective for at least a thicker skin.

I am managing to ever so slowly get some necessary things done. I found a therapy group for people with disabilities that meets in Berkeley. I'm hoping it will help some.
stonebender: (Default)
Its not been my best 10(?) days. Caught a head cold that moved to my chest. I thought I was doing ok. I was managing to keep the panic of possibly choking to death at a not too frenetic level until last Thursday's visit to Alta Bates ER. After determining I didn't have pneumonia, was keeping my O2 levels in the 96, 98 range, but had low potassium. Which was treated by drinking about the nastiest fluid I've ever voluntarily consumed. I ended up back home. I have been getting ever so slowly better, but I haven't enjoyed the night spent coughing. Nor the mornings trying to get all this gunk out of my lungs.

I'm still a little sick and want this cold *over with* already.

[profile] dbubley's sister has been really great at helping me get my breathing treatments.
stonebender: (Default)
Now I know what may have contributed to my horrible mood a couple days ago. I have cellulitis again. On antibiotics and things are getting better. Every time I get this stuff I am pretty pissy and more depressed.

I'm mulling over the idea of participating in some civil disobedience. There are plans being made for a demonstration against our governor and the budget cuts next week. I have been asked whether I wanted to participate in some guerrilla theater or be one of those willing to be arrested. It's been a very long time since I've done this sort of thing. I'm pretty sure I'm not up to guerrilla theater but I feel like I'm not doing enough to fight the devastating cuts our governor is suggesting. So far he is apparently standing firm on balancing the budget only with cuts.

Aside from some systemic changes that I believe need to be made, there have been a couple tax suggestions that make some sense to me. Apparently, the medical marijuana people are volunteering to have their product taxed. I haven't seen any numbers about how much money that would bring in but if they're volunteering...

Another suggestion is to put a tax on oil being extracted in the state. We don't tax it now and we are the only oil producing state that doesn't. I think Chevron can stand the increase. I still think some big changes need to happen to the budget process, but those taxes may get us over the hump.
stonebender: (Default)
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!
stonebender: (Default)
via [personal profile] wild_irises, who knows [profile] goodbadgirl

Apparently Oprah is thinking about doing a show about Lyme Disease. Because it's expensive to treat, the US government doesn't want to admit that it exists.

More info: excerpt:
Here is what I'm asking you:

1) Re-post my original request and this post if you want to. Tell your friends, your co-workers, your family members. Cutting and pasting has never been easier or likely to help more people.

2)Register on and add your voice to the forum. 10 minutes or less of your time can make an enormous difference here.

Here is how:
Here is the link where you can post a message - if you are already a member of Oprah's community.

If you are not a member of the Oprah community, you will need to sign up first:
click on this link to sign up:

Once you have filled out the appropriate info -- easy stuff, name, username, email address, birth year -- then you will get an email to your email address: You'll get an email from Oprah's web people sending you an activation link that you will need to click on in order to get started. Then you can click on the above link and post your comments.

3)Educate yourselves and your loved ones about Lyme disease. How many of you on my relatively short friend's list suffer from "mysterious" and "hard to diagnose" auto-immune disorders and chronic infections? Too many of you. How many of your stories are familiar to me? Way, way too many.
Pass it on.
stonebender: (Default)
What a day. Lived through a very long panic attack. I called [personal profile] loracs in the midst of it. She stayed with me over the phone. Then [personal profile] serenejournal IM'ed me. She dropped everything to come be with me. They are such wonderful women and I am very lucky to have them in my life.

I wish I was feeling healthier. The cold is definitely going away, but I can't work up much enthusiasm for my birthday. [profile] dbubley is back at the rehab center, but she's still feeling nauseous and has just an awful roommate. She's not having fun. [personal profile] loracs is exhausted. [personal profile] serenejournal is dealing with so much. *sigh*


stonebender: (Default)

June 2017

11121314 15 1617

Important (to me) Links


RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags