morgandawn: (Art Noveau Blue)
[personal profile] morgandawn
Posted in full at: http://ift.tt/2tFMHfT on July 24, 2017 at 11:12PM

Tags:not a reblog, charity, DWCrosspost

Tumblr post (this is likely a reblog, and may have more pictures over there)
stonebender: (Default)
[personal profile] stonebender
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.

quick update

Jul. 24th, 2017 08:29 am
morgandawn: (Cat Basket Going To Hell?)
[personal profile] morgandawn
am working on Vividcon plans. we just spent 4 days trying to trap an injured feral cat on our property (we were successful. or rather all the people who did the work were. I was cheerleading and getting sunburned) so we've fallen waaaaay behind.  and today we are off to see a specialist that we've been trying to see for 10 months (he travels doing medical research). and [personal profile] xlorp is in the midst of emergency coverage for 2 co-workers who are out on family leave/vacation. and....



morgandawn: (Art Noveau Blue)
[personal profile] morgandawn
Posted in full at: http://ift.tt/2uOLmCL on July 23, 2017 at 07:49PM

Tags:IFTTT, Fauxthentic History, DWCrosspost

Tumblr post (this is likely a reblog, and may have more pictures over there)

Vividcon

Jul. 23rd, 2017 10:35 am
morgandawn: (Vid Free! As Free As The Wind Blows...)
[personal profile] morgandawn
 Who is going? Can't wait to see you all.

Work Venting

Jul. 16th, 2017 09:09 pm
rebelsheart: Text: Experience is the name we give our past mistakes. (Experience)
[personal profile] rebelsheart
So Friday at work, an hour and a half after I'd intended to leave, I finally finished everything that had to be done by Monday. So did FTE coworker H. So of course, we spent 30 minutes chatting about our manager having been a bit of a jerk earlier that day and then doing math that I can basically describe as stress validation.

During a call with our manager, H started to complain that we had a lot of work to get done, and was cut off by the manager, who asked if we thought if teams in the other divisions (notably, he referred to what used to be his only team, in South). We were both put off by this, and we weren't trying to compare our workload in relation to other divisions, only to the other two regions in our division.

While there is a restructure in progress on a national level, it's not expected to be done until sometime in the first quarter of 2018. In fact ,the last divisional team to incorporate into the national restructure will be ours.

We looked at active directory and tried to get an idea of how many users each regional team in our division had. H and I make up two thirds of field IT in the Mountain region, with contractor C in Salt Lake City being the other.

Mountain has 370 users and three field techs across three states.

California has 260 users and three field techs and a supervisor. Somewhat obviously, it is only one state.

Northwest has 168 users and three field techs and a supervisor across two states.

Apparently, back before H had a horrible car accident and missed a year of work, there were three field techs, a supervisor, and the divisional manager in Mountain. There was not a supervisor when I started in May 2016. The divisional manager left in march 2017 and his position was eliminated as part of the restructure.

The math we did was users per tech. We did the math two ways, as the supervisors do pick up tickets in addition to escalations.

Mountain: 123 users per tech.
California 65 per tech (87 if you ignore the supervisor).
Northwest has 42 users per tech (56 if you ignore the supervisor.)

That math alone validates our frustrations in our opinion, and I kind of wish we'd gone into the call with the manager with this knowledge.

Now here's the iffy math. Mountain is 3 states: Colorado, Utah, and New Mexico. H and I are the primary support for all but 2 (extremely remote) users in Colorado. C, based from Salt Lake City, handles those 2, as well as all of Utah and New Mexico as his primary users.

C has maybe 70 users for whom he is primary support. I'm guessing half of those are in Salt Lake City. Our AD doesn't break users down that far in OUs, and we didn't really want to count.

Colorado has 4 outlying offices with maybe 30 people between them, and it might be as low as 20. The downtown Denver office has 70, half of whom will be moving to the largest office in the state at the end of August. That office hosts all of operations for the division, and serves as the base for several national teams.

Now you get the idea of just how stressed and frustrated H and I are.

And I can safely say that the stress is impacting my personal life as well. I rarely spend time in front of any sort of computer system anymore to relax. Guild Wars 2 I log in to for mostly missions. I didn't touch the Wii U for probably 2 months, having spent 6-8 hours a weekend playing Breath of the Wild since it launched. I don't even play the games on my phone often, other than to occasionally distract me from work when there's a moment or two to do so.

Once again, I'm burning out, and I don't know how much longer I can last. I've been a contractor ever since I moved to Colorado, and that will be 3 years in August. I started my first job here on October 20, 2014.

I'm looking forward not only to the Disney world trip in October, but the convention in December as well. And I'm barely two weeks back from the last one.
morgandawn: (Ariel Yes?)
[personal profile] morgandawn


UPDATE: I heard from them. The archive is closed to new submissions but the admins are still there and can be reached via their Help Desk. There are no plans to move the archive.


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