Category Archives: Complications

Long Time No See.

Hi there.  Believe it or not, this blog here does still exist.  I can’t believe it’s been over a year since I’ve posted anything.  WordPress even looks different since the last time I’ve written!  To anyone that may care, I apologize (and I do not mean that in a snarky way!)  I feel that life gets in the way a lot of times.  Or it could just be something that I’ve realized about myself recently ….. I am lazy AF.

 

My friend George posted recently and maybe you can say he gave me a little motivation to post for the first time in a while as well.  I would have a lot to go over to update you on the past 14 months so I won’t go down that road.  I’ll just mention the big parts 🙂

 

I commemorated the 35th anniversary of my diabetes diagnosis on December 24th.  It’s truly hard to believe I’m old enough to have had type 1 for so long!  I didn’t necessarily do anything to “celebrate”.  Being that it’s on Christmas eve, that always steals the thunder 😉

 

Let’s see.  Most recently, I have been recovering from surgery to repair tennis elbow (or lateral epicondylitis).  Don’t ask me how I got that because I haven’t the slightest idea.  I first went to the doctor for it March of last year after it had been bothering me for a few months.  He tried a cortisone injection but sadly, there was no improvement.  I went back in September after the pain was getting worse and the doctor was straight with me that if it was lasting this long with no results from cortisone, it was highly unlikely any other treatment would work beside surgery.  This doctor had performed not one but two trigger finger surgeries on me in the past so if I had to have another surgery, I was glad it would be by him.  He sent me for an MRI just to verify the condition and it showed that not only were the tendons damaged, there was a tear as well.  No wonder it hurt so much!   So a bit over 6 weeks ago the surgery was done and recovery has been going well so far.  It’s been challenging at times since it was on my dominant arm, but the incision healed nicely and I hope to be using my arm again fully soon.

 

I’ve had some struggles on the blood sugar management front – my A1c was at its highest in years in the fall.  I’ve managed to get it back down some at my endo appointment last week but it still needs work.  I do attribute some of the rise to a change in birth control pills (TMI?) that occurred in the summer.  Man, did I have some awful insulin resistance!  My insulin was like water for quite a few weeks.  I am more independent when it comes to changing insulin rates and whatnot but it came to the point where I called my endo in desperation.  She could not believe how much insulin I was taking.  But I’m glad I thought of the new meds because other then raising my ratios, she didn’t offer much in terms of finding the root cause.  Things got more “normal” when I switched back to the pill I had been taking previously.  Thank goodness.

 

And back to my laziness.  In being a hermit for a few weeks recovering from surgery, it highlighted just how lazy I really am.  And that definitely plays a part in the work that my A1c needs.  I do not log.  Ever.  I almost never upload Dexcom or pump info.  I occasionally check the Clarity app to see what my estimated A1c is (which was spot on with my latest reading at the endo by the way) but don’t look at the trends really.  I don’t exercise like I should.  I don’t eat like I should.  I don’t pre-bolus like I should.  Yet I do bolus for every food I eat.  I do wear a medical ID bracelet.  I do carry some form of glucose with me.  I do not over treat lows.   Those things my endo always looks for makes me look like a super star.  But how do I get over my laziness and do the little things that will make the most difference?  I wish it were as simple as telling myself to just do it but I already hear in my head – I don’t feel like it.  Have you ever been faced with similar feelings?  Have you found something that gave yourself a good kick in the rear?  I’m open to suggestions 🙂  Being that I’ve had strong anxiety about something happening to me health-wise (more on that in another post), I’m surprised that hasn’t been the kick that I need.

Updates.

So summer 2015 is almost over already.  And only 4 months left of this year.  How on earth did that happen??!?  This year is completely flying by.  It’s been months since I’ve posted, so I thought I’d give a general update.  In case anyone wants to know 🙂

Since mid-March, I’ve been back on my beloved OmniPod.  I switched to a different pump at the end of last year because of insurance changes.  My durable medical equipment is no longer covered at 100% and the cost of pods are significantly more expensive compared to traditional pump infusion sets and reservoirs.  However, I received a promotion at work in March that came with a decent raise.  So I jumped back on the OmniPod since I could afford it better.  And I’m one happy pumper!

I was using Apidra in my insulin pumps for over 3 years.  Come January 1st, my insurance stopped covering it.  Since they were already not covering Humalog, that left me with switching to Novolog.  I used Novolog for some time before switching to Apidra and it worked ok.  So I went back to it.  Until recent weeks, I was noticing high postprandial readings and realized it could’ve been the insulin.  One of the benefits I found from Apidra was better postprandials.  I consulted my CDE about it and she offered to file a pre authorization for me.  I figured why not?  Well it was approved!  So I am now able to get Apidra for the next year.  Phew.

I had my quarterly appointment last week with my retina specialist.  Since it’s going on 4 years since I was diagnosed with retinopathy/DME, these appointments are always a little nerve racking.  But I received a good report!  After just one treatment of Lucentis, my eyes have been stable since.  For this I am EXTREMELY thankful.

Other things have been a bit hectic over the past two months.  I’ve had numerous doctor appointments with no end in sight yet.  It started with a trip to a cardiologist, which was a first for me.  I mainly went for peace of mind and not because I was having symptoms.  Of course with type 1 diabetes, especially having it for a long time, the higher chance is there for heart issues.  I had an echo-cardiogram and a stress test which thankfully came back normal.  Although not without major anxiety.  I was having some periods of dizziness so that lead to a bunch of tests including a cat scan of my frontal bone and carotid artery test.  Luckily those were normal and the dizziness subsided.  I had a full blood panel completed which did not reveal any major health issues.  It did show that my A1c went up a bit but I’m hoping Apidra will help get that back down.  I found my very first primary doctor.  I do not actually see the need for one since I have a multitude of specialists and see my endocrinologist regularly.  However it seems for certain things, she may actually be helpful.  And I liked her so that’s a plus.

I’ve been dealing with leg pain when walking for years and years.  I had an NCV test done a few years ago which showed no signs of nerve damage.  I also had an arterial doppler done two years ago which showed no sign of any vascular abnormalities.  Along with the echo-cardiogram and stress test, my cardiologist ordered an ABI test, which tests for peripheral artery disease.  This test was inconclusive which in one way is a good thing since there was no definite sign of PAD.  My primary doctor ran blood work to check muscle enzyme levels.  Normal.  She referred me to a neurologist who I saw today for a consult.  She ordered an MRI and an EMG which I will have done in the coming weeks.  She thinks it is a mechanical issue which I’m not even really sure of what that means.  This chapter is to be continued.

I was diagnosed with gastroparesis a few years ago and IBS before that.  And they have not been playing nice lately 😦  I’m paying a visit to my gastroenterologist next week (she’s probably feeling left out!) to see if we need to explore other treatment options.  And praying she doesn’t want to send me for any tests!

While all of these issues may not be diabetes related, they have most certainly been explored more thoroughly and seriously because of it.  My head is spinning because of all the appointments and tests, and it’s hard not to get down from it all, I’m trying to remain positive.  Staying on top of my health is something within my control.  I am more than happy to endure endless tests and meetings with doctors if that means I can identify issues early and treat them accordingly.  Diabetes be damned.

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Some Updates.

I realize I have not been blogging much lately so wanted to say hello to everyone and let you all know what’s been going on around my neck of the woods and keeping me busy.  Or maybe distracted.

 

  • It seems my blog anniversary completely slipped by me!  The end of August marked four years since I started here and I want to thank everyone that has ever stopped by to read, to comment and support me.  This wouldn’t mean to me what it does if it weren’t for all of you.
  • In July, I had a repeat gastric emptying scan done.  Unfortunately it confirmed what both me and my gastroenterologist figured, my gastroparesis has progressed.  Compared to the first one I had four years ago, it is still considered mild but it has gotten worse.  She prescribed two medications to take as needed and luckily I’ve been able to manage without them.  My hubby did some investigating to see if there were any natural remedies to help and he found out about ginger root.  I have been taking capsules before most meals and have noticed that it does help.  Thank you hubby!  I have learned a lot about this condition and it is not something that I would wish on anyone.  I’m truly hoping that managing my blood sugar as best I can will help keep it mild.
  • A few weeks ago I had my very first insulin pump infusion site infection, after almost 8 years of pumping.  I had removed the pod from my lower back and it was a little sore which is not completely unusual.  However the next day it was extremely painful and with the advice of a friend, I had it looked at by a doctor.  It was indeed infected so was put on 10 days of an oral antibiotic.  It has healed nicely but I have to admit I’m a bit weary of getting another one.  I’m hoping it was just a one-time-fluke type of thing.
  • I have been more involved with IRL citizenship and advocacy type efforts.  I am part of the citizenship committee as well as the disability network at my job.  It is very fulfilling to be part of such great networks and helps make my “regular” job more worthwhile.  I am also on the walk committee of my local JDRF chapter this year.  It makes me proud to be part of an organization that has announced such exciting advances in type 1 diabetes research in recent months.
  • Over the past 2 months, I haven’t exercised and my eating habits weren’t always the greatest.  While I’m finally working on changing that now, I was extremely surprised at the results from my endo appointment this past week.  A1c went down, not up like I expected and also one of the lowest I’ve ever had.  Also I lost a couple of pounds.  None of this makes much sense to me and really not the motivation I was hoping for to get back on track but honestly I’ll take it.  It makes me think back to all the times I was expecting and hoping for an A1c a lot lower than it turned out to be.  Sometimes diabetes is just unpredictable.
  • Most importantly, on September 3rd, my Mema (grandmother) passed away.  It wasn’t sudden as her health had deteriorated rapidly since earlier in the year but I still cannot believe she’s gone.  I’m glad I got to spend more time with her the few weeks before she passed, even though she may not have realized it was me.  I’m glad and thankful she was a part of my life for so long.  I’m glad that she lived such a full life – she would have been 95 next month, had 8 grandchildren and 17 great grandchildren.  I’m glad that she went peacefully and is now in a better place.  But it still hurts and I miss her dearly.

 

I suppose that’s most of it in a nutshell.  I’m hoping for more peaceful times to come and to make a better effort at blogging more often.  Especially with a big month coming up with a lot to do and say.  Oh, one more thing.  I got the new iPhone 6 on Friday (I was one of the crazy people who pre-ordered early in the morning on September 12th and not the crazy person who got on a line at the Apple store two weeks ago) and would highly recommend it for other iPhone lovers out there!

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(image credit goes to the internet)

What Brings Me Down – Diabetes Blog Week 2014.

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Today is Day 3 of Diabetes Blog Week and the topic = May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

 

To me, this is probably both the easiest and the hardest topic to write about.  The easiest because there is just so much that goes into managing diabetes psychologically so the material is endless.  The hardest because sometimes it just seems simpler to not confront the negative emotions that come with dealing with it day in and day out.

I think what brings me down the most was seeing first hand all the complications from T1D my father endured for years, ultimately losing his life from it all.  There is not much more heartbreaking than losing a parent, especially losing them to the same disease you yourself live with.  However instead of dwelling on those dreadful, heartrending, painful details I focus on the life that I am living.  I have had T1D for over 32 years already.  And while I have started with minor complications, they are minor.  I am extremely fortunate to have access to tools and resources that help keep me on top of my diabetes as best I can.  Early detection is critical which is why I have routine exams with multiple doctors.  While I’m fearful of complications that may occur, I do not want to encourage the progression of those complications by discounting them.  My father was diagnosed during a very different era of diabetes management and I need to remind myself of that.  He also went undiagnosed for a long period of time based on symptoms.  I on the other hand, was diagnosed very early, thanks to the knowledge he and my mother possessed.

I try my hardest to focus on the positive.  I take one BG at a time.  I take one doctor visit at a time.  I strive to accept the things I cannot change and since I cannot change having T1D, I need to accept it.  If I let it, the fear and weight of his suffering and his loss would consume me.  So I choose to not let it.

New Doc Update.

A few of you had asked me to keep them posted on my new endocrinologist story.  Which I appreciated.  And so here is an update.

I saw Dr. R last week.  Was it magical?  No.  Was it dreadful?  No.  Was it satisfactory?  Yes.  It was kind of strange to have to start from the very beginning of my diabetes life when giving her my complete history. But I had to and she updated my records with the information I gave her.  I of course included the minor complications I have been dealing with over the past couple of years.  She wasn’t surprised by this since I have been living with diabetes for over 30 years.  She asked if I was on an insulin pump and when I confirmed I was indeed on the OmniPod, she asked for the PDM right away to download.  Note: at my old practice, this information was only downloaded at my CDE appointments.  She inquired about my last A1c and how it has been generally speaking.  When I stated that since being on the Dexcom CGM, it has been pretty stable around the 7% mark, sometimes a bit lower, sometimes a bit higher, she asked for the Dexcom to be downloaded and was almost shocked why I didn’t give it to her upfront.  I explained that I was not used to having my devices downloaded at endo appointments.  I felt so silly!  We spoke about general endo issues as well including celiac.  When I was tested for celiac about 2 years ago, it wasn’t at the suggestion of my endo but at my own request.  I inquired how my visits would go in terms of seeing her and other staff in the practice, like a CDE for example, she said to her it was apparent that I did not need continued education so it would be quarterly visits to see her.  However I would have access to a CDE in the practice, one who I could contact for anything.  She ordered a bunch of blood work which was done in the in-office lab (plus!) and a urine analysis.  She requested I see her in three months when she will perform a follow up sonogram on thyroid nodes that were identified on me last year.  I called yesterday for the results of my lab work and was pleasantly surprised when she was the one who called me back.  The blood work and urine was normal and my A1c is back under 7%.  All of which made me extremely happy 🙂

Moral of the story.  Was I blown away by the first meeting with this new doctor?  I wouldn’t say so.  But she was more assertive in addressing things than what I’m used to.  And she adjusted one of my insulin to carb ratios, something that has never been done for me by an endocrinologist.  And we got along.  My dear husband’s view is that I became stagnant at my old practice and a change would be good.  This doctor is also associated with a bigger and better network which could be a benefit down the road.  I’m feeling positive which is definitely a good thing.  I think I will take the next three months to decide but I’m already leaning toward keeping Dr. R.  What I am very glad about is that I am an empowered patient and have the wisdom to make this sort of determination.  I wish everyone could have that knowledge and not settle for mediocre health care.

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Recharge.

Have you ever felt that something in your life needed to be “recharged”?  I have been going to my current diabetes care office for about 14-15 years.  When I met my husband, I think I was still seeing my pediatric endo!  Fortunately my mother in law worked in one of the local hospital systems and recommended an endocrinologist to me, one that she knew of from the hospital.  And so I went.  I was pleased with Dr. R and the rest of the staff including both CDEs that I have been seen by.  It was under her encouragement that I went on an insulin pump almost 7 years ago.  Then about 2-3 years ago (I think) Dr. R left the practice to go somewhere new and since then I have been seeing her replacement, Dr. K.  I am very comfortable with this office.  They always get back to me and get any paperwork or prescriptions filled out pretty quickly. They even know me by just the sound of my voice!  I go for my visits every 3 months like clockwork.  I don’t dislike Dr. K at all but sometimes I feel that she may be too easygoing.  Only ordering blood work at my own request.  Not fully understanding why I have some minor complications after 31+ years.  I have been feeling recently that maybe an overhaul of my health team was in need.

 

This past weekend we were at a friend’s 40th birthday party where I met a fellow person with T1D.  We chatted briefly and she asked who my endocrinologist was.  She told me hers and said that she loved her.  That got me thinking even more.  I made a call to this new doctor yesterday to find out if she was accepting new patients.  She is, however a referral from a doctor is needed in order to be seen.  Even though it sounded strange to me, I went in search of who could provide me with the referral.  Lo and behold, my awesome gastroenterologist was willing to provide me with what I needed.  And I have an appointment scheduled for early next month.  I have such mixed emotions.  I’m hopeful that maybe I will love this doctor.  I’m scared about seeing someone new and being in a new environment.  I feel bad about finding somewhere different, like I’m cheating on my current health team.  I’m optimistic that my diabetes management will get the boost it possibly needs.  But most of all I’m nervous that it will turn out to be me, the one who has been too laid-back with things.

Again?

Right after Memorial day, I came down with an illness.  I was sick for almost 2 weeks with multiple trips to the doctor to rule out pneumonia.  It was diagnosed as severe bronchitis and warranted a dose of steroids to finally get rid of.  It was one of my sickest moments and I was hoping to never have that again.  Ever.

Fast forward to the end of summer, Labor Day being just a couple days ago.  And I am sick again.  With just about the same symptoms, just not as severe.  Needless to say, I am not a happy camper.

What has me bummed the most is I don’t understand why I keep coming down with such illnesses.  Yes I know that being a person with T1D, my immune system is compromised.  But I have been trying to stay healthy, especially over the past 6-8 weeks.  I have been exercising about 5 times a week, making healthier food choices, and adding a nutritious meal replacement shake to my diet.  And yet I still got sick with not just a little head cold.   Is diabetes really to blame?  Would I be getting so sick otherwise?  Do you feel like you get sick a lot too?  I know I will get better but it’s been a week already and I’m frustrated with feeling so bad.  Right now, I am hating this and wish there was something to blame.

Day Four of Diabetes Blog Week, 2013.

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A day behind but here is my post for day four of Diabetes Blog Week.

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

I’ve given this topic some thought over the past few days.  So much has changed over the past 31 years, mostly for the better, with accomplishments along the way.  I found it hard to pick just one thing.  The first thing that came to mind was my more recent A1c track record of being under 7%.  Then there is my retinopathy not progressing over the past 18 months.  Or walking about 3 miles with excruciating pain in your legs and numbness in your feet from neuropathy seems like quite an accomplishment at the moment.  Even exercising 4 times in one week can seem like something to be proud of for me.  There are even the graphs of 24 hour no hitters on my Dexcom.  I certainly celebrate all of those!

What I came to realize is that all of these things together is what my accomplishment truly is.  Living with diabetes for 11,452 days and doing pretty well.  Going through the motion of checking BG, dosing insulin, counting carbs multiple times a day, every single day.  Forcing juice down my throat when I feel like I’m going to puke to keep myself alive.  Moving along with my day when my blood sugar is high and all I want to do is drink, pee or sleep.  Keeping up with routine endocrinologist appointments.  CDE appointments.  Eye doctor appointments.  All the other diabetes health related appointments.  Picking up prescriptions every few weeks or month.  Keeping tabs on insurance coverage for said appointments and prescriptions.  And doing all these things for so long without losing my mind.  Even finding happiness between the lines.  Not to mention making tons of great friends along the way.  This is what I have accomplished and it feels pretty darn good.

Day One of Diabetes Blog Week, 2013.

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Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

My diabetes health care team consists of two people for the most part – my endocrinologist and my diabetes educator (CDE). I am fortunate to consider my relationship with both of them pretty darn good.  I spend more time with my CDE, M,  at each visit (although I hate to admit it’s been a while since I’ve seen her) since we go over in more detail my blood sugar readings, glucose monitor history and other records like food and exercise.  My endo, Dr. K, goes over things with me at more of a high level.  Since M and I do a lot of poking and prodding while together, I feel like she has a true sense of my day to day management.  I also talk more with her about my advocacy efforts, social media involvement included.  With that being said, I think there is something that I would like Dr. K to know.

I’ve started with minor complications.  And this seems to surprise Dr. K.  I’ve only been seeing her for about 2 years.  (I’ve been going to that diabetes practice for about 15 years but Dr. K took over for my old endo when she left for a different practice)  For this reason, she has only really seen the better side of my diabetes management.  When I first began being treated here, I was on MDIs of a sliding scale with an A1c in the 8%-9% range if I had to guess.  Then around 2006, I got much more serious about things and got an insulin pump.  It was ever so slow progress, but over the years since then, there has been improvement in both my A1c and my overall management.  Maybe in her eyes, this is how I’ve always been.  But I haven’t.  I’ve also have diabetes for 31 years.  This is a long time of high and low glucose levels.  Much of that time with higher than desired levels for various reasons.  These things can lead to complications. I’ve seen what can happen through my father.  And I am scared to freaking death of that.  I’m doing everything I possibly can, now, to keep the complications to a minimum.   I sincerely appreciate her goal of keeping my A1c at a desired level, without too many lows, to keep my diabetes health in check.  I’m very glad she realizes the importance of that in this stage of my life.  But I’m not sure why she’s surprised at what has started in my body.   I don’t think she’s ever asked what my diabetes was like all those years ago.  Maybe that would help her put things in better perspective.  Even so, I’m hoping we can continue to work together to keep me alive and my organs healthy for a long, long time.

Diabetes History.

Unfortunately I’m not talking about some major breakthrough in the research for a cure or some mind blowing new product on the market.  I am referring to history that was made yesterday in my own diabetes world.  I had my quarterly appointment with the endocrinologist but it was also my annual physical with her, so a much more comprehensive exam.  As usual, I was nervous.  I hate that I get nervous every time I see her but I can’t seem to help it.  Thankfully yesterday was probably one of my best appointments.

I had printed out my BG readings for her, in all sorts of different report variations, from downloading my OmniPod PDM the night before.  In scanning over them, I wasn’t too pleased with what I saw.  In the past month, my BG was in the 80-180 mg/dL range only 61% of the time.  180-250 was 23%, over 250 was 5%, 60-80 was 9% and under 60 was 2%.  In other words, higher than I would have liked.  My last A1c test was done at the end of April so I was overdue for my normal 3 month routine.  That last result was over 7% and had crept up .2% since the time before that.
As I’m sure I’ve mentioned before, in the past 5-6 years, I have been much more diligent with my diabetes management.  Between going on the pump, testing more frequently, using the CGM uninterrupted for the past 3+ years, keeping up with my appointments with the CDE, trying to stick with a regular exercise routine.  Despite my efforts though, I have only had an A1c under 7% once.  Four years ago.  And to this day I still think it was a mistake!  However, yesterday it happened again.  Since I am not shy about sharing my A1c levels , it was 6.7%.  (although it seems much easier to share when it’s a good result!) I literally hesitated for a moment when Dr. K said it and I said to her “wait, what?”  It was a complete shock.  My overall BG readings have not been much better or worse than they usually are.  And especially after feeling that my readings have been higher than I’d like, having almost a 1% drop was not at all what I was expecting.

I was almost too happy to care at the moment about why.  But later I really started thinking about it.  And honestly the conclusion I came up with is that I wish I knew what I had done right the past 4 months so that I could keep doing it!  I’d say in the past 4 months I’ve been more consistent with exercise than before.  Yet I wouldn’t say I’ve been consistent ALL the time.  (the past 2 weeks for instance have lacked exercise big-time)  So the only thing I can think of that had such an impact is my choice of BG meters.   When I used older One Touch meters and when I first started using the PDM with the Freestyle strips earlier in the year, I always thought the readings ran low.  Since switching to the newer Verio IQ as my primary meter and more recently changing the calibration code on my PDM, my readings run higher.  Could this be the magic trick?  Is there a scientific reason this could be?  I’m not sure and I guess I shall see if this trend continues.  And I sure hope it does.

In other news, I have lost some feeling in my feet but this I knew.  At my physical exam last year, Dr. K saw this and sent me for an NCV test which came back normal.  Yesterday was the same – I stopped feeling the vibration on my feet from the tool thingy (tuning fork?) before it actually stopped vibrating.  I do get major pain in my legs when I walk so she had them do a Doppler test.  Which also came back normal.  So the feeling loss in my lower extremities does not appear to be from nerve damage or circulation issues.  While I’m glad it is not for those reasons, I’m stumped as to what it could be from.  Something else I will keep monitoring.

Good appointments like this leave me feeling happy, naturally.  And hopefully not so nervous for the next one.