Friday, August 22, 2014

Just what I needed

As previously blogged, I have no sensation in my feet. Yesterday, I stepped onto an uneven surface - but the lack of sensation didn't warn me that it was uneven ... AND that my foot was NOT firmly planted. Therefore, I almost fell - when my left foot twisted under.

I knew it was injured - because for the first time in years I felt pain ... LOTS of it. I applied ice packs and hot compresses and had no swelling or bruising - initially. I sent a secure message to my Primary Care at the Tallahassee VA just to cover myself, but didn't expect to need any further contact.

This morning, I could barely walk and the least amount of pressure was excruciating. There was also some swelling and bruising - therefore, I called the Tallahassee VA and left a voice mail for my Primary Care.

I was called back within a few minutes - X-rays were ordered; come over right now.

You know it isn't good when the X-ray Tech tells you to wait and brings a wheelchair because - Your foot IS broken!

Now I have this:

and a walker ... and orders to stay off of it!

For those interested, I have a 'Jones Fracture'.

Wednesday, August 20, 2014

Wow ... just, wow!

The temperatures have been crazy hot; it has rained almost every day; it REALLY hasn't been a good time to try to train on my handcycle ... SO! I got a special deal from SportCrafters on an Overdrive Handcycle Trainer.

What's that, you ask? It is a roller trainer that increases resistance just as if you were rolling down the road.

I got everything set up - including the Garmin Ant+ Speed Sensor - and went for a short trial run. It is MUCH harder than I anticipated ... partially because I went "faster" than I anticipated.

How fast did I go? Average was a little over 6 MPH - which is NOT fast. HOWEVER, I hit a PEAK speed of ... wait for it ... 62.3 MPH!

Yes, it was a VERY short peak, but it shows what the new gearing is capable of. Going down a hill will put far less resistance on the wheel - and me. Going up the hills is still going to be a workout, but going down the hills is going to be a LOT of fun!

Monday, August 11, 2014

Good News ... and not so good.

I saw the Chief of Neurology today, and had some EMG studies.

They had baselines from 2010 to compare to ... My nerve conduction, etc has dropped 50 - 60% in the last 4 years - not so good. He said everything indicates progression of my previously diagnosed condition - and it's going to keep progressing. At some point, I will be stuck in a wheelchair.

The good news - he doesn't think the CT Scan results are contributing to the neurological deficit; I'm NOT a candidate for surgery, so there will be no invasive procedures (such as a myelogram) done.

He ordered some more lab work, will do an in depth review of my case and leave notes for the Doctor I see in September.

St. George Island Sizzler 5K

Late Saturday afternoon, I rolled the St. George Island Sizzler 5K ... and it WAS Sizzling! It was over 100°! There are more photos on the way, but here's what I have so far ...

Lined up at the start ...

In the lead!

It was HOT!

Just over 1K to go ...

Rocking my tutu and 1st Place Wheelchair ...

Wednesday, August 6, 2014

One more time

I hadn't heard from my 'New' Neurologist by 1:30 PM, so I called the Neurology Department at the Gainesville VAMC ... and was told:

  1. You have an appointment in September - as if that was supposed to answer my immediate requirements;
  2.  The Neurology Doctors (Fellows or Residents from Shands) are only here twice a month, that's why you haven't (and probably won't) be contacted by your new Doctor before your appointment in September. Only twice a MONTH - Really? This is the ONLY Neurology Specialty Clinic in the VA System in the North FL/South GA Region. It covers North Florida from Ocala. north to the FL-GA Line and from the Atlantic Coast to the Apalachacola River. It extends into Georgia up to Valdosta. You are telling me you only have the Clinic open TWICE a MONTH? They should be open AT LEAST once (if not twice) a WEEK!;
  3. I then asked to speak to the Chief of Neurology - he wasn't in, yada yada;
  4. I then asked to be put through to the direct line to the Patient Advocate (not the voice mail line) - suddenly I was put through to the Chief of Neurology that wasn't in o/O;
  5.  He took my information, said he would review my file and call me right back;

It was more than a few minutes, but he told me he had reviewed the past few YEARS of my chart so he would have a better understanding of my case. The CT Scans needed to be followed up on, but he didn't think the problems shown had any SIGNIFICANT impact on my Neurological issues; My progressive problems were PROBABLY just that - progression of my existing condition; he didn't want to do any invasive procedures such as a myelogram until more in depth nerve conduction studies had been done.

I have an appointment at Gainesville VAMC on Monday (nothing earlier than October, oops September - yeah, right). They are going to do a comprehensive EMG, and then I see the Chief of Neurology ...

The best part of all this ... I first saw the Chief of Neurology when I had my LAST EMG studies and HE is the one that pointed to my Lumbar Spine as the root (see that play on words - tell me I can't pun) cause of my lower extremity neurological deficits!

Tuesday, August 5, 2014


Since I never heard back from my Neurologist, I called the Gainesville VAMC yesterday. My Neurologist was a Resident/Fellow from Shands ... and graduated and no longer was associated with the VA; they had to assign a new Doctor to my case; he would review things during my follow-up appointment in OCTOBER; call my Primary Care Physician in Tallahassee; yada yada.

Needless to say that was frustrating.

I sent a Secure Message to my Primary Care Physician at the Tallahassee VAOPC ... and the Nurse noted that I had contacted Neurology at Gainesville, so the matter should be resolved. o/O

I responded back that it wasn't resolved, and called the Patient Advocate for my Region - and had to leave a Voice Mail and was told it may take up to 48 HOURS for them to respond.

It only took 24 hours for the Patient Advocate to respond. They contacted Neurology ... My October appointment has been moved up to September (something 'impossible' yesterday); I have a new Doctor assigned, but he is out today (but is supposed to contact me tomorrow); yada yada.

My Primary Care Physician called - he is filling the prescription that the out-going Doctor failed to fill; told me the new Doctor's name and verified that he has a message waiting for him; yada yada.

I feel a little better about things now - I was falling through a crack and managed to patch it up some. Now I just need to see where we go with the CT Scans of my Spine that show "Significant Abnormalities - Attention Required"

Saturday, August 2, 2014

On A Positive Note

I am trying hard to get the 'right' crank arms for my handcycle. Katie (RT at the VA) has a quote from Top End, and is advocating for me to get it approved by a Doctor and the money allocated. We shall see ...

I also have my neck rest in from The Finer Recliner!

Steve Sussmann is great to work with and has great products - I highly recommend him!

The neck rest will get it's first trial by fire next Saturday during the St. George Island Sizzler. Given the temperature and humidity levels we've had lately, fire might be an understatement.

Friday, August 1, 2014

The State of the Body

As I previously blogged, the Neurologist wasn't happy with my worsening issues, so he ordered a lot of blood work and CT Scans of my Lumbar and Thoracic Spine.

Reading the Notes by the Neurologist was less than encouraging. He suspects a couple of things that he 'somehow' failed to talk about while I was actual there.

The blood work was mostly normal with a couple of marginal results that MIGHT be contributing factors.

The results from the CT Scans of my Spine are in ... and it isn't encouraging.

The reason for the Thoracic Spine Scan ... "Symptoms suggestive of Thoracic Myelopathy" - which the Neurologist did NOT mention. The findings by the Radiologist - 'yada yada' SIGNIFICANT ABNORMALITIES - ATTN NEEDED (and, YES, he did put that in ALL CAPS).

The reason for the Lumbar Spine Scan ... "Neurogenic claudication" - something else the Neurologist failed to mention. The findings by the Radiologist - 'yada yada' SIGNIFICANT ABNORMALITIES - ATTN NEEDED (and, YES, he did put that in ALL CAPS also).

Google is NOT your friend when it comes to Medical Diagnoses (or suspected diagnoses). Even with a fair amount of medical background and knowledge, I was (and still am to a small degree) in a 'funk'.