New Device with a new purpose

So I am still in the middle of a re occurrence. NeuroSarcoidosis, Transverse Myelitis, whatever it is it knocked me on my butt literally. I have slowly progressed from using a walker and wheelchair to a walker and a Frankenstein like unassisted walk. I am in Physical Therapy and learning a great deal and making progress.

Sometime right before this hit, I had a problem with my Microsoft Band and gotten return approval for a replacement. A great deal of time has passed and Microsoft has discontinued the Band, which I think is very sad. I loved that device. Granted when I went from WindowsPhone to an iPhone a great deal of the joy was killed. Those reasons were mostly the “smart” part of the device, the activity tracking and the associated web service were still exceptional and I will miss them.

So as I mentioned I am in Physical Therapy and I started to feel better, at least at times. I want to monitor this, gauge my progress, push myself. Like my Lumia devices I found you could do this with an iPhone but making sure I always had it in my pocket was less then optimal. Even with the FitBit app you can create a device that uses the iPhone sensors. Don’t get me wrong this still served the purpose but I was looking for more.

Microsoft Band is not an option and I am no marathon runner, heck I have not been able to run a 5k run since the first onset over ten years ago so I don’t need a high end device. I did some shopping and I found myself back at Fitbit. Yes I have to admit that I looked at the Apple Watch but I am nor ready to throw down that kind of money and not being a hater but the feedback I have encountered indicates to me that it needs improvement and I am certain it will improve over time. I received a Fitbit Blaze and it is a nice device but I still prefer an actual wristwatch and I have several, I was looking more for a device I could wear as a watch but primarily a band I could wear on the other wrist. I used a FitBit flex before and until the Microsoft Band I was happy with the device to include the app and web service, and the social network to help me keep moving.


So I have been wearing a FitBit Charge 2 for a few days now. This version is a nice combination of convenient form factor and functionality. It has only been a few days but I have to say the device is a great value. It will take a few more weeks before I post anything of detail about this device but so far I am a happy customer.

NOTE: I mentioned the social factor component of the FitBit service. Peer pressure, contests, etc are a handy component, that extra push when feeling lazy. Issue is it only works with other FitBit users. Interested in competing with friends or just the general community you might want to check out Inkin.



And we wait

So this has been a long stint. Much like one of the DIC episodes I sit here in a hospital bed to receive steroids. Seems I respond to them so it’s a pattern.

All this started after I incurred a staff infection that worsened. That all seemed to clear up but I noticed an issue once I got home. Hey I was on some heavy antibiotics so nothing to be concerned about…

Twenty days later I was crying like a baby thinking I was about to become a paraplegic as my legs shut down. My right leg a useless limp limb. Even in first instance I never needed physical assistance to walk but right now the are two walkers in my house and I needed them. 

A quick push of Prednisone and I walked a little better but my right leg was still dead. 

Unable to get sleep because it’s not just my legs that are a problem. Monday morning around 2:30 I felt a huge wave of pain then warmth and realized things just got worse… Ugggh how.

I did some work made some plans and then went to the Emergency Room. Catheter in, physical assessments done and of too a room.

Hurry and wait but a neurologist appears… Exchange of information and history and we start addressing symptoms (steroids are not a treatment). A few days later and a fresh set of MRI’s taken. The steroids didn’t get my leg back but swelling was dramatically reduced and discomfort levels dropped substantially.

Doctors convene and looks like I am going on yet another ambulance run. Plan was send me to main campus at the concentration of the Neurology department.

Well certainly a nicer room. I got in at a rather late hour but received the immediate attention ⚠ of several Neurologists for the initial assessments.

Steroid drop continues. Large grout of doctors next day, lots of questions and response diagnostics. All of the previous uncertainties restated but there is thought.

So for the two lovely conditions I have, I don’t really fit. With CVIDS my produce antibodies so not a clear case, TM again I don’t check all of the boxes.

Today I hear the doctors are getting good documents from my other episodes. Nothing firm but looking like we are looking at the neurosarcoidosis diagnosis again. This refers back to a previously confusing set of events in my second TM occurrence. Again I didn’t hit all of the markers because the biopsy did not show the granuloma expected. Upside the is a treatment, diagnose is with the Affordable Care Act can I afford it? 

Hopefully there is more information coming.