Real horrible timing but the day before I went on the shelf (hanging in the ER for several days) I received a Microsoft Band. Admittedly this wasn’t an easy decision. I really liked my Fitbit Flex and when that died I started using my Lumia 1520. I loved the Fitbit flex, especially since the tracker could be removed which was very handy when performing activities like bicycle activity. Being able to shower with the device on was also handy in my opinion.
Then the new trackers starting coming out. I didn’t like that you couldn’t shower with them on, and the non-removable tracker. While the technology, or the complexity of the newer devices, justified it, these were devices for a simple purposes. I held off on getting a new device.
As I have mentioned on here, after being struck with Transverse Myelitis running really wasn’t an option so I rely on my bicycle (one day I would like to add a racing bike to my mountain bike). With a recent update to the Microsoft Band, bicycle training was a focus. That pretty much did it. To be fair, watching someone interact with their text messages via their band helped. The other feature that swayed my decision was the, at least advertised, tracking of other workouts such as weight lifting.
I received the device. Now this is funny, much like people negated the Lumia 1520 because it was too big and bulky, similar things were said about the Band. Like I said it was funny because I found it petty then and it’s just as petty with this device. The display is great, it can actually be worn as a watch instead of a watch on one wrist and a tracker on the other.
Interaction with the phone and customization is great. The dashboard offers some good information but I wish it had the social piece that Fitbit provided for that extra level of encouragement.
Hopefully I will be able to put this to its real test soon as I start working out.
Quick post after a rather scary and frustrating episode in the issues I have encountered with CVID. I have had a minor cough and odd congestion for months. My primary care physician has been useless, just trying to get an appointment has been futile. Knowing what a potential infection can start, I tried calling my Hematologist and consistently hearing why are you calling us. Granted I was spoiled by my treatment while at the Cleveland Clinic, where they would error on the side of caution. Moving on.. so one trip to the ER when I start feeling symptoms… I get some fluids and sent on my way. Symptoms grow worse and this time… rush to the ER. My hemo numbers were low in the 4 range. I felt them come on… this feeling you can not describe technically, it’s just like you can feel the fluids are missing. Standing would cause rapid heart rate, loss of breath and disorientation. Again the hematologist chose to respond with “why are you calling us”. I had to work some things out and then I new it was time to go to the ER. After a brief time in the local ER, I was transported to the main hospital. Ahhhh let’s resolve this right??? First day, nothing until late, 80mg Prednisone. Well let’s include the three attempts to get up to 11 vials of blood (so about 34 in all). Next morning a quick blood draw, hemo numbers up slightly, more prednisone. No exploration for an infection or other cause. Another day, same routine, numbers down now. Really a rough one after I was told I would be released and continue the medication and be tested then to be told that my numbers were down. Other than nothing but mention of a follow up infusion plan.
Late Wednesday night they come for a blood draw to type and match my blood. Could this be they are actually going to try something? Day passes with nothing. Finally late (around 5pm after sitting doing nothing) I get two units of blood, no easy feat considering factors specific to me and there are discharge papers. Three hours later two units infused and getting ready to go. I doctor starts to call the nurse to question the discharge. They did nothing for days beyond the normal rounds now a buzz of activity. Incredible nurses push through, then have to call because there are no prescriptions with my discharge papers, meanwhile the other doctor is still fighting the discharge. We bust out.
Coincidentally I had a first appointment with a new Primary Care Physician. Just to have a new family doctor close to home. He looks at the concerns of infections I have and writes me a prescription for antibiotics. We will see as I am sure I have a few more days of less than full strength but mentally knowing some consideration was made beyond the arrogance of “specialty” gives me peace of mind.
The follow-up appointment with my hematologist in a few days could be interesting.
This tends to be common for me, get a cold and when the symptoms linger you debate whether you should call the doctor or am I just panicking. Well the day before a big move I got a cold and I quickly sensed it was more than a cold…. but I had a ton of boxes and furniture to move and very little time to do it. I got a call that my new IVIG Infusion was approved and they could get me in… nope I have to get this move done, rescheduled to the next week.
Move finally completed, cold obviously worse. I make my infusion appointment and they prescribe me some antibiotics since what I suspected was more than a cold is certainly more than a cold at this point.
The doctor said that it might take a few hours, maybe overnight, but I could be feeling much worse as all of the IVIG hits my system while I have an active infection. Uggh was he right.
The problem is despite some minor relief I have not gotten back and the cold seems pretty much gone at this point, yes still taking the antibiotics as prescribed. The kicker is some of the symptoms are similar to what I was feeling a few years ago when I had a near fatal DIC episode. This time however I am still functioning, not well but that’s another story. So the internal debate consumes me…
I wrote a quick post about my Lumia 1520 and it’s ability to track activity, much like a Fitbit. I have been really enjoying the Nokia Motion Monitor beta eventhough it was local to the phone unlike synching up to a cloud service like fitbit.
Well yesterday I received an email from Nokia Beta Labs to inform me the beta has ended. Before I get into what I am looking forward to I have to complain a little. I have been using WindowsPhone 8.1 since the developer preview release and really liking it. There is one piece that is missing and that is the Cyan firmware upgrade. Why does that matter? Well in order get the value of Nokia Motion Monitor into the Bing Health Fitness the phone needs that firmware in order to enable the sensor data to be recorded. The data is still recording to the phone so not a major issue just odd timing.
Okay, the goodness is the tracking data will be posted to the Bing Health and Fitness app. This is an app I already like, despite it’s workout tracker is a little too limited. The beauty is there will be no sync, no need for a USB dongle or Bluetooth Low Energy. This SensorCore technology should also open it up to other apps (looking at you GymBuilder Pro).
Since adding friends to my fitbit profile I have found it to be a much more useful device or should I say service. The peer pressure to get up off your butt is huge. The dislike I had for the fitbit had been mostly because I am a windowsphone user and the sync process was less than optimal. However they recently updated the software and it now synchronizes as a background task. I found that out by accident… Recently moved into a new residence so lots of steps. I received a notification on my fit that I had taken the lead within my Fitbit friends… wait how is that possible since my laptop was packed away and I certainly not gone in and performed the steps to sync the data. Ahhhh the other laptop in the house, with the fitbit dongle attached was online. To have this same thing with a device that I seem to always have nearby conjures up thoughts of discarding my fitbit as just another device.
That thought is flawed in my experience. As I mentioned above I recently moved so I hit my goals and more for a few days. Now yes I have the 1520 which is a large phone, but even if I had my 920, there were times when I wouldn’t want to risk phone when lifting boxes and furniture. I have mentioned something similar in the previous post about continuing to use my 920 for things like working out or mowing the lawn. Conclusion, these types of service are a useful tool for monitoring your activity (recent health issues it is something I am very focused on again) and the peer pressure factor is huge. Neither solution is perfect (I have mentioned fitbit seems to fail for activities like strength training and bicycle cardio work) but I can see combining them for the near future but if my Fitbit dies I will go with a phone only solution.
So, I had put together a long post but then what I thought changed… So the hematologist had to back off of the CVID diagnosis. One of the tests took weeks to be conclusive. The “provocative” test consisted of immunizing me for a certain virus and then checking to see how my body responded. So after weeks the tests were in, and my body was producing anti-bodies so no CVID. Ugggh so back to square one. Well the hematologist, still very confident of his diagnosis, referred me to an Allergist/Immunologist.
In the meantime, no Prednisone, I was really back to square one.
I see the allergist/immunologist, go over the lengthy history (at this point I am having a hard time remembering when things happened and what order they came in). His affiliation with both Cleveland Clinic as well as University Hospital he had access to both sources of doctor reports and testing results. A few questions and we were back down the CVID route. Another series of blood draws. Followed up in two weeks and he feels CVID is confirmed and wants the IVIG infusion (can’t call it treatment as it is more like maintenance/preventative measures) resumed.
So the takeaway was I have CVID. Most people with CVID present with chronic infections, then there is the 7% like me that in general do not present with obvious conditions. So the upside is I am not chronically ill, the downside is I can suffer surprise attacks like the DIC episode as well as the recent ITP and possibly the Transverse Myelitis.
Well the last few days have been, shall we say interesting. I am still trying to take it all in as the “event” is still ongoing. It all started when I needed a colonoscopy and it was prevented by the surgeon based on my prep blood results. Flashback as this has been going on for 19 years now, back to when I was going to get minor surgery for rotator cuff repair. I was placed on prednisone to get the numbers up. Eventually I did have the procedure and wow I felt better, from the time the prednisone started, than I have felt in the years that my TM resurfaced. Had the procedure, was back to my normal workout schedule and feeling great. So then I needed to start stepping down on the prednisone, so another blood test. Within an hour of having the blood drawn the doctor was calling me to tell me I needed to be in the ER. Huh? I feel great (I hadn’t noticed all of the bruises)! My platelets were not just low, they were zero. WTH!
Well a few days in the hospital and my platelets, while still low, were at a manageable level. Left the hospital, no steroids or other treatment, just an order for more blood tests and an appointment. Had a very rough weekend, where the bruise was started to really hurt/bother me, tired as heck and just felt like crap. Get my blood drawn. Went to bed early that night because I was dragging. Woke up to see a voicemail, it was the Hematologist telling me he needed to see me in the infusion clinic. He came in to meet me on his day out of the office. My platelets were basically back at zero. I received a large dose of prednisone (yes feeling much better) and told to stay at that does until further notice. Received my first IVIG infusion. I am still not sure about that, as the Remicaide infusions really seemed to be just a money grab for the hospital system in my case.
Now some interesting notes I have taken in all of the information that has been told to me… Sarcoidosis appears to be out. Yes it effects the lymphnodes but so does CVIDS and ITP. IV Prednisone sucks, but the oral form … I can see it being addictive. I am feeling positive as the Hematologists I am working with seem truly interested and excited to help me, but I have been through this before and still worry that once things settle down and I am no longer an interesting case, I am also not on their radar but we will see.
More to come…
So this one probably ties in with my health stuff as well as my recent technology upgrade.
When researching the 1520 there was a news article about an app that would track your steps. I didn’t see the need at the time. How does this apply to anything? When Sarcoidosis hit this time it really wiped me out. Between the discomfort, energy drain and working conditions I really had to make a conscious effort to focus on not stopping.
I got a FitBit flex, and while it works there are some flaws in the whole concept. Aside from the fact that the company couldn’t keep enough replacement bands in stock (hmmmm wonder why, maybe because they ripped too easy) and the fact that shortly after releasing the Flex they came out with a new one with all of the things they left out of the original, such as counting stairs and showing the time. Some of the limitations are simply the mechanics of doing it, there is only so much detail you can gather. Granted the arm swing is the most logical, so a device hanging on your wrist makes sense. The issues I found are:
- You have to be careful of how tight the band is otherwise it doesn’t move and therefore records nothing.
- It doesn’t record activity like weight lifting very well. Bike riding, as long as you put your hand on your thigh as you peddle it works well but not very practical.
- Carrying something, where you arm is not swinging, while walking doesn’t record anything.
- Pushing a shopping cart in the grocery store triggers it to record sleep mode for some reason.
None of this is for detail tracking so those are just the limitations and just the general tracking and visual reminder is handy.
So now I can get a similar function with my phone. Considering all of the sensors a phone has that certainly makes sense. I know there are other apps but most of them seem centered around running, and running is still something that is really not possible for me. I can see the same impracticalities appearing but one less device seems to make sense. So I installed the app from Nokia Beta Labs and gave it a few days to see what it would do. Without expecting it to be perfect, I have to say it is a well designed app, although it does not have the back end data/web services of something like Fitbit, and simply works.
Live tile shows current data, app is well laid out to give a nice representation of the activity, and the system adds what appear to be some timely notes (too soon to tell).
It has only been a few days so it will be interesting to monitor this app as well as compare the data against the data my Fitbit collects.
So, I heard all the chatter about the 920 and “that won’t even fit in your pocket” (oh how wrong) but I just went from the 920 to the 1520. No doubt this one doesn’t just slide into your jeans pocket but it does fit in the pocket. The 1520 is substantially lighter than the 920 despite the major difference in size. Oh you want to see the difference?
So on the left is the Lumia 920 and to its right is my new Lumia 1520.
So aside from the size difference… the 1520 is lighter and the edges are rounded cleanly and comfortably. I love my 920, so much I kept it and plan on using it as my media player, especially for times when I don’t want to risk my phone, like working out, riding a bike, mowing the lawn, you catch my drift. I had been looking for a 520, oh how I miss my Zune, but hey keeping my 920 is a much better option. Even with no cell service, the wifi is great, I can run the apps and more importantly use the great media player and all of my XBox Music content.
First things I would like to point out about my 1520:
- So I got my phone at the AT&T store… figured being there would be great for the initial install and sync of data since I was in their location and on their network. Bad idea. Their guest wifi is way too saturated and LTE signal abysmal, go figure.
- Going from the 920 to the 1520 was more than a device upgrade. With it came GDR3 and the new Nokia firmware. Personally for me this was huge. Little details like giving contacts a ringtone, not just for calls but also for text messages, something I had voted many times for on http://mywindowsphone.uservoice.com/ ; the Glance screen shows new messages, emails and other notifications. Just some real nice enhancements and much sooner than I had come to expect considering how long it took to get GDR2. I still have to go through http://mynokiablog.com/2013/08/09/wp8-gdr3-features-list/ but being able to close tasks from the multi-tasking screen is nice.
- Performance – there is no doubt this is an upgrade. All aspects of performance are markedly better, as one would expect when upgrading. Seems self-explanatory but isn’t always the case when upgrading.
- Button layout… that the back button and the search button, the search button more importantly, are more to the center of the capacitive bar is huge. In just a few hours it was easy to see how less frequently I will be aggravated when I inadvertently hit the search button when simply picking up the phone and rotating it in my hand.
- Accessories. This issue I am torn on. Considering how often a new device is released I can only imagine that developing accessories is something that is just not feasible. By the time a manufacturer designs one, and puts it into production they have probably already heard about a new model. The lack of accessories is an issue in my mind. For starters the Qi charging is not in this phone so there go several of my already purchased accessories. I am not a fan of putting a case/shell on my phone, but a case so I could clip it on my belt would have been nice.
I continue to be a fan of this platform. With the Lumia devices it has grown even stronger. Even the apps issue, not something that concerned me from day one, is improving in large measures. Now I have to do some more testing with this device.
Catching up… so I haven’t been here in some time. I tried another blogging service and just gave up.
So, still in my second bought with Sarcoidosis. Changed providers because despite what we hear, my experience is the hospitals are worse than the insurance companies in the whole healthcare debate/debacle. No real news, until recently, but at least I did get a doctor who could explain how we went from Transverse Myelitis to Sarcoidosis. In short it comes down to lymph nodes as Sarcoidosis is the only immune issue that affects the lymph nodes. I did get some medication to help with the symptoms, but in truth the side effects were worse than the symptoms.
Not my first rodeo with this so, accepting and adjusting to the symptoms and just pushing on.
More recently, while the symptoms were about the same, I lost a ton of energy and then a massive weight loss (30 pounds in about a month) kicked in. I went to see my Primary Care doctor. Had all of the normal blood work done and a few more, no results that weren’t expected. The doctor scheduled me for a procedure, did all of the prep and was waiting for the procedure when the surgeon said that based on my very low platelet count he wasn’t comfortable with performing the procedure.
So off I went to see a Hematologist. Obviously with each doctor, the conversation regarding my history is long and generates interesting response. Now I have a new acronym… another? Oh well, I might as well accept it and see where it goes and since the surgeon and the Hematologist both mentioned it maybe there is something to it. ITP http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura