stonebender: (Default)
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!
stonebender: (Default)
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.
stonebender: (Default)
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*
stonebender: (Default)
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.
stonebender: (Default)
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.
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.

Opinion

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."

Linda

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.

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