I am moving my blog to here http://www.kavanaghtech.net/personalblog/
So with the name change, from Windows Live Essentials (2011) to Windows Essentials (2012) came some confusion with two of the products. Those products being the video and picture file tools. Both were named with the Windows Live moniker previously and in many cases you could find the application in the Windows Live folder. With Windows Essentials, these files are named straightforward albeit confusing, Movie Maker and Photo Gallery.
One of the reasons I am even posting this is a friend mentioned that they downloaded a product so that they could organize their picture files based on tags. So the obvious question was why another piece of software? With Photo Gallery you have a great tool to manage your media files, to include tags (in addition to geotags and ratings) and you can search your collection by those tags. While it’s no Photoshop replacement it is a handy utility that should be installed on windows7 and windows8 computers.
Install Photo Gallery using http://get.live.com
So it’s been a few months now so I figured I should post.
To get it out of the way right away… Windows Phone 8 announcement and it’s demoting the Lumia 900. I find it odd that Microsoft and Nokia spent so much marketing a phone that they knew was going to be lessened. I did hold off on getting the Lumia knowing Windows Phone 8 was near, there were conflicting reports of whether or not the Lumia 900 would or would not run Windows Phone 8. My Samsung Focus was wearing thin and when I saw the lame second version they came out with, combined with the AT&T pricing for the Lumia 900… I got a sweet phone. My reaction to Windows Phone 8 not running on Lumia 900 was disappointment. Not anger and I do not think the Lumia 900 instantly became a brick. Between the software Nokia continues to roll out and improve and the updates Windows Phone 7 is slated to receive I can see this being a viable device for quite some time.
So with special pricing and the trade-in value for my Samsung Focus I spent around $50 for a new phone. Out of the box the device looks great, feels solid without being heavy and the display is great.
The button placement (all of the buttons on the same side of the device) was an adjustment (Samsung Focus had Power and Camera button on one side and the volume controls on the other) but I found the placement more ideal especially when in landscape mode watching video podcasts or other videos. The buttons seem to have a slightly audible rattle if you pay close enough attention, an odd annoyance considering the quality of the build and a basically seamless device.
I put a case on it originally but it really just detracted from what is a very cool looking device and the screen and case have really held up well to normal wear and tear without a cover. The body and screen seem near scratch proof, but they have this silver medallion to advertise the Carl Zeiss lens and this does not enjoy the same benefit as it seems to scratch very easily.
The camera is a little disappointing, but I prefer taking pictures with my DSLR. Nokia’s camera extras software, especially the panorama mode, add some great features and the camera is adequate in a pinch.
Call quality (who uses their phone for phone calls?) is very good. The sound for ringtones and alerts is very good which was a big upgrade from the Samsung Focus. Volume for music and video is very good (oh I wish the Zune premium headphones had a microphone).
Wifi issues were fixed almost immediately in a fix rolled out (amazingly AT&T didn’t hold that back). Interestingly enough I cross into several areas where LTE coverage is available.
As expected the phone was much faster than the Samsung Focus I had been using.
The charger that comes with the phone is great for charging the phone quickly, oddly you cannot order one as an accessory.
In general this is a very nice phone and I can only hope Nokia sticks to the same form factor for their Windows Phone 8 device.
Of course the biggest problem continues, AT&T and their decisions to not update the platform. Nokia rolls out exclusive apps and a few (Nokia Counters) require the latest version. While other carriers have rolled out Tango, no signs of it on AT&T.
So after a 140 minutes in the MRI tube (completely counter productive – your back hurts so you have to sit on this god-awful bench for over two hours) I guess the results indicate I am all healed. The MRI tests were ordered after several infusions to determine if the treatment was working. Listening to the PA (I still don’t have a doctor after the original physician who started me on the treatment left the hospital) all of the tests indicated there were no signs of the lesions or other indicators. I find that all a little odd, if not infuriating, since as I had told her yesterday my back still hurts, my side (around the spleen) still hurts, I still have the same abdomen discomfort, still experiencing the same evacuation issues and oh yeah I still can’t walk or maintain a normal gait. To which the PA asked how was Physical Therapy going which spawned a 10 year flashback… I am not in Physical Therapy, wouldn’t that be something you doctors order/prescribe.
So while I should probably be celebrating I find myself simply dumbfounded. Granted I still have suspicions about the diagnosis, but it’s hard to argue “why do I still have the same symptoms if I am healed?”. I guess it’s back to the self-prescribed physical therapy routine.
So five infusions done as of today. Interesting thing was I noticed one of the symptoms, the paralysis in my left leg, was improving. During the two episodes of what is now diagnosed as Sarcoidosis there is the flow of responding to every change, a new pain here a spasm there, and you think this could be a sign of progress but after months you start to just ignore them.
This time however I was being keenly aware since the increase in my weekly methotrexate dosage was kicking my butt and I wanted to see if I could adjust to it before I asked my doctor about changing medication or lowering the dosage. Also cognizant that my leg would feel a little better when waking up and a little more when I was home for the weekend. With that in mind I monitored the motion and pain/numbness level closely.
As I have grown to expect after a few hours at work there was some change but still the ability to take normal strides with my left leg was much improved since almost one year ago. Certainly not enough progress to consider the term remission but a pretty positive sign. Yes I would love all of the symptoms to go away but some symptoms never truly ceased but if I can pick one of the symptoms to recover it would be the use of my leg.
So after stacking (two infusions only two weeks apart) I start the monthly Infliximab infusions. After the last infusion (2) the P.A. had me get blood work done, the results were good, well as good as my blood counts can be, so she increased my methotrexate.
In the last ten days or so the pain has increased and the use of my left leg worsened. Luckily this is not my first time with these symptoms so I am more patient with all of it. It is a little unnerving that I have been off the steroids in lieu of this “better” treatment and the symptoms have gotten worse. I know I have to be patient but I also know how much “practice” and unknown goes with the sarcoidosis diagnosis, not to mention my lack of confidence in their diagnosis.
Of course I am asked if I notice any differences from the first infusion to the most recent, but when I say no, the standard response seems to be “it will take 5 or more”… then why ask? oh well. Something the P.A. mentioned this time really caught my attention and not sure how I should take it. I guess she was breaking down how the medication works but her words were “Infliximab does a great job of melting the lesion down”. While that sounds promising, it was surprising. From what I read and was told there has been no mention of the medication and it’s effect on the lesion. Still uncertain what the methotrexate was prescribed for, I am even more uncertain what the treatment plan is now. I will have to do some more research and then call my doctor again.
I know from the previous onset, the symptoms will lessen to the point where I can start my own rehab. That is my mindset and keeps me from getting too worked up one way or the other at this point. Yes I am aware that it might not go into remission this time, matter of fact odds are strongly against that but to stay positive I am just looking forward to a time when I can get back into daily workouts and getting back to some form of normalcy.
Since contracting a case of shingles I was taken off methotrexate. Since I had taken my weekly dosage the day before this seemed like a small precaution. It’s been two weeks since that whole episode took place, and it would seem despite my curiosity of how, the methotrexate was actually helping despite the side effects. This week the source of pain, centralizing in the middle to lower part of my back and radiating from there, seems to have returned to it’s original levels of pain (in short excruciating). In general the pain was an after thought compared to my mobility and some internal issues that the pain was a secondary thought. So, maybe what seemed an illogical treatment plan might be beneficial. I guess I will know more when/if the infusions start next week.
Well I should be talking about any effects of the new treatment. Sadly I can’t. During the holiday break I got a case of shingles. That made for a less than stellar week off and then a few days of work. The January 5th appointment was postponed due to an active infection. Granted my concerns about treatment and the diagnosis just not seeming complete may have been a catalyst for this outbreak. However I do think there is some irony in the fact that when the doctor put me on methotrexate (as well as the infliximab) one of the cautions would be the impacts it would have on my immune systems. So it seems a little odd that because of a side effect they knew about, they have chosen to hold off on treatment.
The kicker is the symptoms are getting worse. Mobility has become a huge issue the last two weeks and the numbness that radiates from the back to the front is more prominent making for finding a comfortable sitting position impossible.
Well a month after receiving notification that the treatment plan (Infliximab) was approved, the doctor has all the approvals. So early next year (in 8 days) I am set to begin. The infusion group called and set it up. While the course of treatment is monthly, the first two infusions are 14 days apart, something they call stacking.
So I guess I should be excited, thankful, something on the positive side of feelings but I can’t say I am. I feel a little more dread/apprehension than anything positive. Why? Part of it is ego, vanity, etc… something about the type of treatment I suppose. The other part is still not understanding the diagnosis, theory or connecting any of the little understanding I have with the symptoms and the treatment.
Yes, when I asked the doctor about sarcoidosis and how it was linked to Transverse Myelitis she without hesitation confirmed neurosarcoidosis. The problem with accepting that is I went years accepting Transverse Myelitis (probably easy to do since I rehabbed myself to the point where I thought I beat it) and thinking I had a clue what it was and how it was itself a single diagnosis. Do I have TM or neurosarcoidosis? I have not read anything that claims they are the same thing, do I have two issues causing my symptoms?
Admittedly the methotrexate seems to be kicking my butt, adding discomfort without reducing any of my symptoms, and I am getting very tired of dealing with the symptoms but there are certainly more questions than answers. Hopefully with this new treatment some of that can be squelched.
Oh yeah on the upside the medical coverage as well as my employer are much more open to everything that is going on… that is a Christmas present all in itself.
Thanks for listening/reading.
So before I even got to the doctor’s office, my new health care provider approved the treatment that Anthem initially balked at claiming it was experimental. With that in mind I figured this appointment was to set that treatment into motion. I was scheduled for chest xrays and a spirometry. The x-rays I understood as that would give the doctor a picture of what if anything has changed regarding the indications they are using to say I “likely” have sarcoidosis. The spirometry is an interesting test, neither painful or uncomfortable, just more taxing than you would expect. I don’t understand the purpose of this test. Yes, I know Sarcoidosis more frequently affects the heart and lungs, but I have not had any symptoms with those functions.
So tests done, time to see the doctor. Admittedly I am jaded walking in but that is more about the whole process that has unfolded. First thing I was asked about was the methotrexate. I told the doctor that I really didn’t experience any changes in the few weeks that I took it. I was quickly corrected, rightfully so, that I was supposed to continue taking it. Hey the pills ran out at the same time as the folic acid I was prescribed (to counteract the effects the medication would have on my already suspect blood chemistry) and I thought doc said it would take a few weeks for it to start showing results… Okay so I received a new prescription of methotrexate and the “refills” part was emphasized and I am back on that.
One of my other priorities is try to narrow down a nagging questions. Much like the “likely” diagnosis, I was unclear as to how this was the cause of my TM (Transverse Myelitis). I had seen references to neurosarcoidosis but I had to ask if when the doctor was saying I had sarcoidosis she was referring to neurosarcoidosis or was general sarcoidosis triggering my immune system and the TM was a by-product (I have to rely on the respiratory specialist because the neurologist was quick to wash his hands of my case when sarcoidosis was mentioned – yes that bothers me alot). The doctor did confirm she was thinking my condition is specific to neurosarcoid but of course there is no definitive statement.
I am on the second week of my second course of treatment with the methotrexate. I don’t believe there are any positive changes, but it just gets the mind more active trying to find things. Every new pain or sensation triggers the “hmmmm that’s new, maybe that is my nerves relinquishing and now I can feel the pain” that ultimately leads to “no, just more fun”. There are times when my back is killing me and my leg seems to function better and vice versa but eventually I am left with this is just the symptoms.
Oh yeah I started this with a note about a treatment. So me receiving correspondence stating it was approved doesn’t really mean it was approved. When the doctor’s office called to confirm they were told it was still pending. So more waiting…