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Yesterday I went to Stanford Medical Center for my second attempt at a lumbar puncture for my third maintenance dose of Spinraza. My injections have not been easy. See, I’m a difficult subject. My spine I mean, otherwise I’m a cool guy to be around. I have severe scoliosis and not many access points for the needle. Consequently, I’ve had to lay on the hard, flat fluoroscope table for long periods of time while the doctor tried to find a way into the spinal canal. There have been many repeated attempts. I think I’ve only had a couple of times where they managed to get me on the first try. Second attempts aren’t unusual, but it’s usually because I can’t lay on the table long enough. Yesterday, the doctor gave up. Apparently, the one or two places they’ve been able to access, closed up.

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I haven’t been remarking on my continuing Spinraza treatments. Mostly because the trouble I’ve had in staying on the table long enough to let the doctors find an access point hasn’t changed much. I can’t manage to stay on the table longer than a couple hours and if they can get it done in that amount of time, things work just fine. I have had to reschedule an injection about three or four times now. Yesterday was my seventh shot and I didn’t manage to get it done. It is discouraging to do everything I need to do to get to Stanford and then have to reschedule. I know it’s not my fault, but it’s very difficult for me not to feel responsible. I’m sure a lot of this is internalized male baloney, but there you go.

I really wanted this injection to work, because [personal profile] loracs, my partner, is getting a knee replacement (which is also freaking me out!) on Thursday and she does some of my care and it will be difficult to get to Stanford for another try. I hope all of you are having an easier time of it. I know I’m not alone in the frustration of these treatments can cause at times.
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In case someone doesn't already know, I am a person with a disability and have little use of my hands. At a recent Abilities Expo, I bought an Obi (a robotic feeding machine) to allow me to independently eat my meals. It's a very slick machine and works very well. It's portable, so you can take it with you or just use it at home. It has a fairly small footprint and a cool look to it.

Unfortunately, I have found myself not using it much and I feel like it's too good a gadget to stay on my shelf. I'd like to sell it to someone who will use it. I spent $6000 for it eight or nine months ago. It hasn't been used very much, so I'm asking for $4000. It is called Obi and you can see it working here:. You can also get its technical specs and the cost of it new there.
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In an effort to break through some of this cloud of anxiety/anger/frustration, I was very determined to go to the Women's March today. Got up early (well, for me on Saturday). [personal profile] loracs and I went to the Oakland March. Saw many friends there a few I hadn't seen in forever. We rode BART from San Leandro to Lake Merritt station. This was a first for [personal profile] loracs. She’s never been on BART with her scooter before (or scootie, as likes to refer to it.) Except for some awkward wheelchair-scooter square dancing confusion around elevators, we did well.

A fellow marcher gave out some fuzzy pink hats. Which were warm and comfortable. On the way to the March we were a bit worried about the turnout. We had expected more cars in the parking lot at the San Leandro station. However the turnout in Oakland was pretty big in my estimation. Felt good to be around folks like me. It was a bit too chilly, but [personal profile] loracs made sure I was bundled up properly. I wasn’t exactly warm, but I wasn’t uncomfortable. We tried wandering around after the March, but the crowd was too much for me.

Since neither had eaten much, we headed for Olive Garden and gorged ourselves on pasta, soup, salad. I’m exhausted. It’s been a while since I’ve been out and about for so long. Thank you everyone who showed up and everyone who couldn’t but wanted to be there. Now all we have to do is vote this November. Dump our racist in chief’s cronies, get back the House (and maybe the Senate?) Then we give Trump what he deserves!
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Unlike every other attempt at a lumbar puncture (LP) for my Spinraza treatment last Friday was about as easy and quick as ever. Arrived at Stanford way early because we didn't get any traffic. Checked in, got called almost immediately. The staff at Stanford has been just great to me. Even during the roughest and longest attempts at a LP, they have always been supportive, kind, and very capable. Got on the table for the florescope and about a half-hour later they were in and taking spinal fluid to give space for the Spinraza. Bingo! That was it.

Went to Max's and had macaroni and cheese with bacon for my reward. We shared some potato soup and latkes. My morning worker tried their chili and seemed to enjoy it. [personal profile] loracs got a corned beef Ruben on rye. Everyone was happy.

Usually the day after an LP I'd be in pain and exhausted. I won't say I wasn't a little tired but it was nothing like it has been recently. Now I wait four months, for the next one. *bouncybouncy*
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I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication.

On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!

Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.

I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. [personal profile] loracs and I will be the only ones to notice.

I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, [personal profile] loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.

After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.

On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)

On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.
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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.
stonebender: (Default)
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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stonebender

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