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Second try on the third dose, done!

After last Wednesday’s fail, I talked to Connie about options that had been mentioned. She really didn’t like the idea of the CT assist because of the additional radiation. Since the plan is to continue getting Spinraza regularly; needing a CT assist each time would quickly get me glowing in the dark. :-)

After a couple LP’s, I’d come to realize that some pain medication would help me. When I discussed this with Connie prior to my third dose, she thought, I was trying to treat the pain after the procedure. I am sore for a couple of days afterward. Actually, I’m much more concerned about the pain of being on the fluoroscope table. I thought that pain meds might allow me to stay on the table longer and with more comfort. Thus, giving the doctor as much time as possible to get the furshlinginer needle in my spinal canal.

I don’t do pain medication much at all and with my weak lungs, Connie worried about how pain meds would impact my breathing. She suggested Tylenol. I really didn’t think that was going to touch the pain. So, she offered a small dose of Vicodin. She wrote me the prescription and I picked it up Monday evening. She had suggested I try a dose Monday evening and if it felt okay, to use a dose before the lumbar puncture Tuesday. I ended up taking Vicodin in the waiting room before the LP.

Perhaps it’s a bad sign to go to the hospital often enough to start knowing everyone’s name. One of the nurses who had introduced herself at my last LP attempt asked if I remembered her name. I had forgotten the name, but I tried to play it off by saying that she didn’t look like a Hailey. She asked what name she looked like and I said Sarah. So she asked me whether I remembered her name to see if I would call her Sarah or not. Previously Carol had suggested thinking of Haley’s Comet would help me remember which of course it did. So now Haley is permanently in my memory.

As we walked back to the “staging” area. Basically where I transfer from my wheelchair to a gurney before going into the fluoroscope room. She commented on the blanket I had over my arms. I use it to you stay warm because it’s easy to take on and off. For some reason I hadn’t used it for my first attempt at the third dose. Haley suggested it was my “lucky” blanket and that this time we would be successful since I had remembered to bring it. Perhaps she has a point, because it did work this time.

At first, it seemed I was doomed. I heard too many familiar comments of failed attempts: “We’re almost there…No, that’s bone…Let’s go back to 70, maybe that’s a better approach…That hurt? Sorry sir, did it feel like your back or did it go down your leg?...Bone again”
After almost 2 hours they decided to try a completely new angle and I had just about decided I couldn’t take it anymore when I heard my doctor say, my new favorite words: “I’m in.”

I quickly responded with a “You have to be shitting me!”
“No believe me.”
“Hey, I’m sorry for the language.”
“Oh no need, you just said what we were all thinking.”

After thanking everyone profusely I headed back to get transferred to my wheelchair. Haley brought me some cookies she had made. They were a chocolate chip cookie/s’more mash up that tasted quite good. She told me there were three there. One for me. One for Stacy and one for Carol. She told me I wasn’t allowed to eat all three :-(. Anyway there were lovely cookies and it was very sweet of her.

As I’ve said before and I will continue say, everyone there at Stanford has been so very supportive. I feel like a real champion leaving the building with all the fuss they make.

So now it looks like one more in a month and I will have all of my loading doses. After that I’m not sure what happens with continuing treatment. They don’t know about reimbursements because Medicare is being less than cooperative about committing. Everyone at Stanford seems positive that things will work out. I tend not to be that kind of guy. So I will be cautious until I actually get a real OK.

Now as far as whether the Spinraza is doing me much good. There is very little objective evidence. I will be getting my lungs tested by the pulmonologist after the loading doses. If there is as much improvement as it feels like I have made. It will be documented with the test. [personal profile] loracs tells me she thinks my grip is a little stronger. I do feel like my arms are a bit stronger, but it’s hard to prove. I think I’m making more small gestures with my hands as I talk. Many more gestures than I remember doing in a while. This could all be wishful thinking on my part. I’m looking forward to some third party corroboration.

I’m sorry this took so long to post. I just couldn’t make it work and I’m still not sure I like it, but here is. Now onto September 5 for the fourth and final loading dose. Hoo boy!
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I have been trying to write about my second attempt at the third dose of Spinraza and haven't been satisfied with the results yet. I realize there may be some of you that are worried (or maybe I elevate the concern people might have). So, I should let you know that the third dose was successfully done. I have one more to do and the loading doses are done. I will eventually post in more detail. When I can.
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Looks like tomorrow I go back to Stanford to try again for the lumbar puncture. After last week's attempt there was talk about using the CT to do my lumbar puncture, but that takes a lot of radiation. Using the CT on a regular basis doesn't sound like a good solution. Connie recommended that we try again with a doctor who successfully did my puncture before (actually my first lumbar puncture). So I will be in Stanford tomorrow at 11:30 AM for a second attempt on my third dose. Then I have a month before I have to take the final loading dose.

We did ask Connie about how the delay in getting my third dose will affect the effectiveness of the treatment and they just don't have data for that. She and Dr Day are optimistic that this won't be a problem. We also talk to her about getting pain meds to help with the pain of laying on the table for so long. She's concerned with how the pain meds will affect my breathing. On her suggestion, I'm trying Vicodin tonight to see how I feel. If it goes well I'll take another Vicodin before the procedure. If it doesn't, I'll do what I have been doing and gut it out.
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We got up on time, but took longer than we should have getting out of the house. We got to Stanford a little later than we planned. Scheduling my doses is odd at Stanford. They have some computer difficulties that doesn’t allow the scheduling computer to reflect reality. So we do this weird phone/email dance where my appointment reminders are all over the place.

My appointment was rescheduled to yesterday at 10 AM. The staff want me to be at radiology an hour ahead of time. So for me, that means 9 AM. When the automated reminder system kicks in, I get 10 to 15 reminders. None of which are 9 AM. I get 8:30 AM 9:30 AM and 10 AM, but no consistency. Consequently, I just go by what Connie tells me and I’m usually fine. It is amusing though to get all these reminders that don’t really help much.

We got there at 9. Without much of a wait, they got me into radiology, transferred me to a gurney and I started waiting for the doctor. There was the usual confirming what medications I’m on, and making sure I hadn’t eaten before the puncture. The doctor showed up about 15 minutes after and we did the legal dance of her telling me the possible effects of the puncture. It always makes me smile when they inform me that I might bleed. Really? You’re sticking a sharp object into my body and I might bleed. I’m boggled, are you sure?

The staff, with [personal profile] loracs’s help got me transferred to the gurney and then to the florescope. I insisted that they leave me on the gurney until the doctor was ready and the staff made sure everything was set to do the procedure before the got me on the florescope table. The hard, cold, florescope table. It didn’t take too long to get me positioned properly except for dealing with my arms. They need them up above my head which is a position that my body is decidedly not designed for, but using tape, they can get me where I need to be.

I had been assured that the doctors had looked at my CT pictures from my previous doses and were ready to deal with my unique anatomy. They are always very aware of avoiding the pain of the needle going into my body, but that’s never really the problem for me. The needle and all the probing to find the magic spot isn’t ever really painful. Uncomfortable, on occasion, and I do occasionally get a jolt that isn’t exactly pain but isn’t fun. None of this is a problem for me. The issue for me has always been the position I have to be in for the procedure. The hardness of the table I have to lie on and how very long I have to be on the table. Both of my previous doses succeeded after I was long past my ability to cope with the pain. Both times I was on the verge of quitting when they finally got in. This time was no different except that I endured the 2+ hours on the table and they didn’t manage to get the Spinraza into me yesterday. This is the third time that the procedure didn’t accomplish what we all intended.

I feel like I need to say again and again how wonderful the staff has been at Stanford. The doctors and nurses and orderlies have just been fantastic. They all understand this is difficult for me. I understand that the one reliable entry point into my spine is a very small and complicated target. The doctor doesn’t just need to get the needle to the hole, with all of the calcification because of a long life in a wheelchair, the angle and approach has to be just right. I can’t tell you how many times I heard them say, "we’re almost there just another second..." And they still couldn’t manage to get to the spot. Everyone did what they could do to make this whole thing successful. I’m just a really hard “stick”.

I felt like a failure as I often do. I know this is not a rational response. It’s not like I could do anything to make it easier for them to succeed except to do the best I can and stay in a painful position as long as I can. However, it is always me that says I can’t do this anymore. I feel like I’m calling it off and if I could just hang on a little longer it would be successful. Everyone at Stanford says I do as much as could be expected and I try to hang onto that. This does not prevent the reality that I’ve got to go back to try and do this *again*.

I will say that some of the stress has been eased after talking to Dr Day. He has been involved in Stanford’s Spinraza injections, but we had never met until today. Connie was usually the one giving me the Spinraza, but she was on vacation. Imagine that, going on vacation when I need her. The nerve of the woman. :-) Anyway, I had always worried about maintaining the schedule of injections. I had been told they had to be two weeks apart to the day with a day or two latitude. Dr Day says that the operating procedure is every two weeks for the first three shots and then a month for the final loading dose. However that doesn’t mean there’s a problem if a dose is delayed a little. After not succeeding this time, all the doctors working on me yesterday have suggested I get Spinraza with the assistance of CT. Now I’m waiting to reschedule the third dose as soon as they can get me an appointment.

My family has a family belief. That goes something like this. Thomas’s always get what they need, but they very often have to go the long way around to get it. I feel like I’m holding my end of our belief system. I do think I will get all the loading doses eventually. I’m also not surprised that my journey is the longer way around.

I’m recovering now. It will probably be another day before I start feeling normal. I’ll let you know when I’m scheduled for my third dose. Meanwhile, I hope everyone is having a better time or at least as good a time as is possible for you. *Sigh*
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Following the original schedule I should have I should have received my third loading dose of Spinraza yesterday.

I received a phone call on Friday from Connie, who has given me the last two doses of Spinraza, asking if I could reschedule my Monday appointment to Wednesday. She had just observed the doctor who was to give me my lumbar puncture doing a lumbar puncture on another patient. The doctor was new to lumbar puncture's and apparently the one she observed didn't go so well. Adding his inexperience to my complicated anatomy didn't seem like a good idea to her. I was very touched that she went out of her way to watch out for me. After all she could've legitimately just let the thing happen as it happened. However she took it upon herself to give me the chance at an easier and perhaps a better experience. So I agreed to changing my schedule. Unfortunately the worker that normally comes with me can't make the Wednesday appointment. This shouldn't be a huge problem because the staff at Stanford have been very helpful with transfers etc. I think, [personal profile] loracs and I can manage things.

I'm trying real hard not to get too discouraged about all this. After the first shot I thought I felt a difference in my breathing. I'm not at all sure I do anymore. There hasn't been a lot or in fact any improvement that I've noticed so far. Now they said at the beginning that I might not feel any difference until after all the loading doses have been, well loaded. So, I'm trying to keep hoping, but not hoping too much. It all seems to be about managing my expectations for now. Given the trouble I've had getting to treatments, I'm really hoping I didn't do this for nothing. So early tomorrow it's off for another lumbar puncture and another dose of Spinraza. Then I wait a month for my fourth and final loading dose. Then I believe I've got to go through another approval process for the maintenance shots that will happen every four months from now on if I get the okay from Medicare.

Keep me in your thoughts tomorrow morning and I will let you know how it goes. Thanks everybody.

W00t!

Jul. 26th, 2017 05:07 pm
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Guess what? They did it! This time my second dose of Spinraza is swirling around in my spinal column. It was still pretty difficult this time although they did make some adjustments. I got a CT scan in addition to fluoroscope. I guess the CT gave them a little more information. Apparently I have a lot of bone in the way of some natural access points. The one place they’ve managed to be successful is a fairly small hole and they’ve got to approach it at just the right angle. They worked on me for about an hour. Having gone through this the day before, Tuesday’s hour was about my limit.

Another adjustment they made, was not putting me on the table until the doctors were ready to proceed. I still had to wait while they checked my spine out with the fluoroscope, but at least all the time I was on the table they were working towards the injection. I’m going to have a long conversation with the doctors in the near future. There must be some way they can make this process easier. I’m not so worried about getting my “loading” doses but I am concerned about the continuing process of getting these shots. I have a third dose in two weeks and then a fourth dose a month after that. Then I need to get a dose every four months for the rest of my life. I guess I will deal if I have to but it’s a discouraging prospect.

I’m going to try to respond to everyone individually, but if I don’t get to you, please know that all of your support with the support of my family makes it possible for me to go through this. I think I’ve noticed some improvements in my physical status, but I hesitate to talk about it much this early in the process. I will keep people informed.
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Today was supposed to be the day for my second dose of Spinraza. I showed up half an hour early to my appointment at the Stanford Neurological Clinic. Checked in and was sent to radiology. They told me that the second time should be easier. They had done the procedure successfully once. Documented where they had been successful and things were supposed to go more smoothly this time. Well I'm home and it's 9 o'clock-ish and I did not get the Spinraza today. The nurse, Connie tells me we can try again tomorrow, but if we are unsuccessful, I don't think I will be getting anymore medication.

Like last time, I was transferred from my wheelchair to a gurney. I had to wait a couple of hours because there was another person getting Spinraza ahead of me. I guess they're getting a lot more interest from people with SMA.

Around 11 o'clock they wheeled me into the room and transferred me to the cold hard table they use. They positioning me on my left side again and then I waited 10 or 15 minutes for the doctor to show up. Normally this isn’t a big issue I’m used to being patient and waiting for doctors, but laying on a flat surface is painful for me. My diagnosis causes contractures in my joints especially my hips and knees. So I don’t really do flat surfaces very well and making the surface hard doesn’t improve the situation.

Eventually the doctor showed and they finished positioning me and started taking pictures to decide the best site for the lumbar puncture. After 30 minutes or so they numbed me up and started poking. Now I want to be clear the staff at Stanford are really great to me. They were very thorough and professional this time. I just apparently have a uniquely fucked up spinal column. Even though they saw what looked like a very promising site for the puncture they kept hitting bone. Around an hour and 30 minutes I was starting to get in real pain. I had been in pain since they put me on the hard table and I was able to manage it but at this point I was starting to feel like couldn’t really take much more. I was even neglecting to report some pain from the puncture because it just didn’t really hurt as much as the rest of my body.

My shoulders ached, my hips hurt and the ribs on my left side were killing me. The doctors kept asking me to hang in there and Connie asked to give them five more minutes. They pulled out the needle, changed doctors and took another try at a whole new area of my spine. (After having made two attempts higher up on my back.) After another 30 minutes the doctor said she was very. very close and to hang in there. I tried for another 10 or 15 minutes and reluctantly pled uncle.

I was in agony. I was sweating. I was exhausted. Frustrated with myself and the universe for screwing around again. They rolled me on my back and eventually got me into my wheelchair. My worker, who came with me, had an appointment for her doctor at 2:30 in the afternoon. We hadn’t thought we would be at Stanford this long, but once I was done we rushed to the car and tried to get to Highland as soon as possible. We did manage to get her to the hospital about five minutes late and she texted us later to tell us the doctor saw her. So at least I didn’t screw her day up.

Connie said she would try to work something out. You see this drug has to be administered on a strict schedule once I had my first dose two weeks ago I have to have the next two doses in intervals of two weeks. However it turns out that I have one day leeway. I must get my next dose tomorrow or I think I need to start over again. I’m not at all sure I would get the approvals. I am the first person with Medi-Cal and Medicare who has been approved for the treatment. I was supposed to be the test subject. Connie said she'd call me later and she did. I have an appointment to try again tomorrow.

The problem is tomorrow I was supposed to have my caseworker do their annual review for my IHSS (which funds my personal care workers). I have never had to reschedule before but I had to reschedule in order to go to my original appointment. We rescheduled for the following day which of course now I can’t make. So I need to cancel again and hope they won’t be too upset.

I feel like I failed. I know intellectually I didn’t, but I think of myself as being pretty stubborn and I’m proud of that. Now, I gave up and I can’t help thinking I should’ve tried to hang in there a little longer. I really hope these treatments get easier or I don’t know how much of it I can take. Wish me luck tomorrow. And hope my caseworker doesn’t decide to screw me over.
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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... )
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I'm back from the hospital!

What? You want details? )

Opinion

Oct. 31st, 2014 12:58 pm
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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."
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My partners and I have talked about this type of thing for a long time. I couldn't see enough of how the controls worked to know whether it will really be useful to me, but I Really Want This!
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It wasn't a surprise, but I'm still oddly sad that this morning I found this in my inbox. For those who missed it, read this for some backround.
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Last night, almost 24 hours ago I passed out. [personal profile] loracs and I were coming back from a movie after having eaten Thanksgiving dinner. I had some gastric distress and felt pretty tired. So I asked [personal profile] loracs to put me to bed. I went to the bathroom, but still wasn't feeling so good. I had her put me to bed and roll me on my side half way onto my stomach. So I could try to squeeze out the Hindenburg of gas still in my intestines.

My head was on a pillow and my nose was a little stuffed, but I felt fine. She put the blanket on me to keep me warm and the sheet fell over my face. I knew it was there but it didn't seem to obstruct my breathing and I only planned to be laying on my side for a few minutes. I thought about asking her to remove the sheet, but I honestly felt fine about leaving it there.

[personal profile] loracs went to the study to give me some privacy, and I got to work. After a while, I started having trouble getting my breath. I wasn't scared, it wasn't a big deal. It was just uncomfortable. So I called [personal profile] loracs. No answer. I called louder and still no answer. I kept calling trying to get louder, but I started feeling like I couldn't breathe at all.

I tried to calm down. I tried to concentrate on breathing, but I didn't feel like I was getting much oxygen. Pippin, my dog, jumped on the bed and did what she usually does which is go get [personal profile] loracs. At least I think she went to [personal profile] loracs. I did hear her bark, but Pippin has been barking more lately because we are doing some home remodeling and she doesn't enjoy all the changes. I tried one more time to call [personal profile] loracs and still couldn't call out loud enough. Things started getting blurry and darker. I felt my throat completely close up. The last thing I remember thinking was: What a stupid way to die...

The next thing I knew, there were three big burly guys in my bedroom asking me questions. "Do you know who the president is?"

"Obama?" I answered.

"How old are you?"

"55"

"What year is it?"

I turned to [personal profile] loracs because the answer wouldn't come immediately. She shrugged waiting for my answer and then it came to me. "2013"

The answers seemed to satisfy them. I noticed every breath I took improved my mental state. Turns out they checked my O2 and it was at 92%. 95 to 100 is what I've been told is normal. I already felt like my O2 level was going up. After my bout with pneumonia years ago, I have some experience with these things. The paramedics wanted me to go to the hospital. They checked my heart and it seemed to be functioning normally. I tried to tell them that, because of my disability, I was unable to move my head when my airway got obstructed. I think they thought there was some other cause but I was pretty sure there wasn't.

So I'm fine now, but it was scary. [personal profile] loracs said when she came to check on me I was blue and unresponsive. She dialed 911 and tried to get me to react. She was just getting ready to try what she remembered of CPR when my eyes opened and I seemed to start breathing. I don't remember any of this. I really only came to after the paramedics got here.

I'll call my regular doctor after the holidays just to double check, but I'm feeling physically normal and only periodically freaked out for a minute or two.

[personal profile] loracs is blaming herself and I feel like if she is at fault, I'm at least 50% at fault as well. I thought about telling her to move the sheet, but it really didn't feel like it was obstructing my breathing, until it started obstructing my breathing. It was an accident. A scary accident. I'm certainly glad she was here to revive me.
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My morning attendant gave her two week notice Tuesday. I haven't had to look for new workers much in my life. I tend to hang on to the ones I hire and often before they leave my employment they have another family member or friend who wants the job. To me this is nice for stability sake, but he does make me feel like whatever abilities I need to interview and higher a new worker atrophy before I need to use them. So here I am in the unusual position of needing to higher a new person. In the old days there used to be an informal network of people with disabilities who knew who was looking for work or needed more hours etc. etc. Read more... )
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It could've been worse, I mean there was no bloodshed and no animals were harmed, but the beginning computer class was pretty rough. I had been led to believe, that although it was a beginning computer course most of the people had taken the class before and should have at least a basic familiarity with the computer. They just had some confusion on some of the computer concepts that I would be helping with. Unfortunately there was a very wide spread of computer knowledge/ability. I had one woman who had literally never done anything with the computer and a few people who had managed to do some things, but still are confused by things like how to do attachments in e-mail or download a file. This class was for seniors and people with disabilities, so I expected to need to deal with some accommodations. Anyway two students were pretty severely hearing impaired, but both had lost their hearing late in life so they didn't know any type of sign language. Anyway working with them added a dimension complication and I think I either underestimated my need to multitask in this class or overestimated my ability to do so. I'm trying very hard to be realistic. Most of the students seemed happy with what we could accomplish. I'm positive that the woman who had no computer knowledge was very frustrated with me, but I just couldn't ignore the rest of the class to walk her through everything. I have offered her a one-on-one class to work on basic mouse and keyboard skills. So I can get her up to speed, but she may not be interested after the class she attended. I have some ideas on how to rearrange the class so I can get closer to the students when they need help. Another problem was that I was having trouble seeing the screen from where I was. So it was difficult o give direction. Anyway, I'll work on getting better organized. I have five more classes and then the funding may be ending. I guess this is just another opportunity for growth. :-)
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Off to teach my first beginning computer class at the Ed Roberts Campus for The Center for Accessible Technology. A little nervous, I hope it goes well.
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It's difficult for me to know what to say about the economy and specifically Gov. Brown's proposed budget. There seems to be little or no patience for even discussing enhancing revenue (increasing taxes), even when the "increase" is just going back to tax levels that were easily coped with by the upper 10%. There seems to be some people who just believe wholeheartedly that there is massive fraud and waste in government. They seem to think that refusing to increase taxes will somehow magically get rid of all this "fraud" and "waste". It also seems impossible to have a realistic conversation about any system change. Look at the healthcare debate.

It happens that most of my income comes from benefits. I depend on services like In-Home Social Services (IHSS) which is the program that pays for personal care so I can stay out of a nursing home. Lately, every year during California's budget cycle, I find myself making the same arguments with little apparent effect. Nursing homes cost considerably more per person to pay for than paying for the same services being provided in my home.

Unfortunately, because of long historical precedent, there is a bias towards institutionalizing folk like me even though it has been demonstrated again and again that nursing home care is much more expensive and less humane. In the last three or four years Gov. Schwarzenegger has offered budgets that completely eliminated IHSS. Fortunately, thanks to advocates for people with disabilities and some great state representatives who understand the issues, IHSS still exists even though it was cut last year. Gov. Brown is suggesting deep cuts not only in IHSS but many other programs that people depend on to lead reasonably tolerable lives.

Lots of programs are being cut, I happen to know more about those related to people with disabilities. Some of the consequences of Gov. Brown's proposed budget would cut IHSS once again across the board. It would require all recipients of IHSS to go to their doctor and get them to sign something that says the loss of IHSS would mean that that person would need to go to a nursing home. Why he wants this is confusing since everyone receiving IHSS needed to get a note from our doctors saying the same thing. Seems like a waste of resources all around, but I believe they're hoping the additional bureaucratic dance will cause some people to drop off the rolls.

There is also a suggestion that people with disabilities who live with someone may have any housekeeping hours cut because I suppose they assume that whoever lives with them will do that housekeeping. I know lots of people disabilities who have roommates just to help take care of the rent. Why a roommate should be obligated to take care all that housekeeping is beyond me.

Because cuts are coming to all sorts of programs that people depend on, many of us have been dealing with cut upon cut upon cuts. Gov. Brown talks about not liking the cuts and that we all must share in the burden. What goes unspoken is the cuts proposed could keep people imprisoned in their homes. Taken from their homes to institutions. Necessary medical treatment and medicine will not be given. More people will be homeless or go hungry. All to make sure that a small percentage people can buy so many homes they can't even remember how many. I wonder where the shared burden is there?
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I'm sure everyone is dying to know what I thought of The Lost series finale. Sorry it's taken me a while to get to writing this. I'm struggling with feeling pretty isolated (all my fault, but still).

The thing is that I think I may be one of the few fans of the show who didn't really care how it ended. Well, that's an overstatement. I cared but I didn't expect everything to be tied up in a nice neat bow. I assumed it was going to be left a little ambiguous and I was right.

See I enjoyed all of the mystery of the show. I liked its grandness. It was a Greek tragedy that I reveled in its setup, the characters, the themes. I didn't really want it all to be resolved. So I may not have been as disappointed as some and I'm certainly not as excited as others were about the ending.

Here are the spoilery bits )
stonebender: (Default)
Skip this if you don't want to read me rant about durable medical equipment. OK I have been disabled my entire life. I've also been dependent on a lift that helps the transfer from my wheelchair to my bed and vice versa since I was around 10, I think. I have used the same type of lift for the entire time. The company that manufactured it has changed hands, but the lift has been the same. If you have seen a "patient" lift before it has been most likely been a hydraulic lift. It has a pump that you pump up to lift the a person up and then there's the valve that you open to let the person down. I've had to use those lift at times and I've always had terrible luck with them. They develop leaks and often can't hold pressure. I've hurt myself on several occasions using a hydraulic lift. I much prefer what used to be referred to as a crank lift. Like this: http://www.flickr.com/photos/45526056@N00/4172991387/

It uses a screw and there's a crank on top. Crank one way you go up crank the other way you go down. If your hand happens to slip off the handle, the crank stops. It's much lighter than the hydraulic version, less likely to break and tougher.

My present lift has begun to make noises that worried me. When I was in the market for a lift the last time I discovered that my preferred lift isn't made anymore. Last time I was able to purchase a slightly used newer crank style lift. Now that this one is need of replacement, I again can't find list I prefer. I'm somewhat resigned to going to hydraulic, but another feature of many hydraulic lifts is the base of the lift is kind of a U shape. The actual lifting mechanism resides at the bottom of the U (think of looking down at the lift from the ceiling). The base is also able to spread wide in order to get closer to a bed or a chair. I find these bases to be unstable and will often widen when you don't want it to. Now my preferred lift as what's called a C-base. If you look at the base from up above it looks like C. the lifting mechanism resides on one the top or the bottom of the C and there are no moving parts. The base is designed to wrap around the chair to get close or slide under a bed. I much prefer this kind of base and guess what? I can't even get the base I want. Advertisements talk about all these different kinds of lifts, but in reality most of them are slight variations on one model. If I want to lift, I have to take the only one available really. I can't tell you how much I hate this.

Today I find out that the mask I use for my bi-pap will no longer be available they have "upgraded" to a gel type. I tried several masks including gel type and all they did was produce sores all around my nose. Now that they've "upgraded" I can't get the mask I want! Grrrrrr

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August 2017

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