What's next?
 

A few Sundays ago I took my wife and two kids out for errands. We went to two stores. This "simple" trip took enough out of me I had to take a four hour nap. That's right, one hour longer than Gilligan's fateful tour.

I already spend a lot of my weekend and evening convelescing, preparing to be able to work the next day. It would be great if it were not necessary. I am working toward a game plan for if/when necessary or not, we are able to press on with little disruption to our regularly scheduled way of life, but I was really disturbed by this day.

This was four hours of my prime time with my favorite people. So I thought about my job and how there are other positions in the same title that are less stressful. They also mean there is less to little chance of advancement, but I think I am past the point of fooling myself on that.

Despite ridiculous adherence to lifestyle changes and diet for two years the only thing advancing is my symptoms.

So I thought about all the folks before me who were infirmed at my place of employment and the oral history of their treatment. I opened the patient portal to my neurologist and requested a letter requesting the best, least stressful accomodations within my job title for me.

The response- What exactly would you like it to say?

Now I had no plans to lead with this letter. I just wanted it in my pocket in case it was needed. I sent back what I thought was pertinent and within an hour received a response that the letter was in the mail.

As if kismet, certain unrelated things happened that caused openings within the department I hoped to end up in. I wanted to speak with my current boss before speaking to the big wig about this all.

She knows about my situation. Her support of my position, including my want to move away from her team left me misty on the road to complete bawling. She told me she wanted what was best for me, though was sorry to lose a solid worker and that she loved me. The feeling is mutual.

So, off to talk to the big boss, who thankfully did not require me to supply the letter, though I do have it in my satchel that goes with me to work daily. The change in job function should take place early next month and with it a precipitous drop in stress.

I really didn't see what else I had to change. I don't have a give less switch as pertains to the job function I had. My old boss pointed out that advancement opportunties are around the corner. I had to tell her it could be right in front of me, I'd have to say no.

My quality of life is far too compromised. I don't want towait until it is much lower or too low to make a meaningful change.

I just know I am weary of my children putting me to bed. It would be fine if I were eldery and they were grown, natural in a way. But that is not the case. Of course I can't know if this will help or how much, but it is worth a try.

So, that is where I am at. Stepping sideways and back in hopes I do not have to step away from work.

Hopefully it works. If not, I will argue endlessly with anyone who has the audacity to claim I did not try with all I had.

TLDR synopsis- I am taking a lesser version of the same job hoping to reduce my stress in the hopes it improves quality of life while effectively destroying upward mobility.

My best,

Jon

Good Morning Jon :)
 

I admire you for making that decision. Imo you have your priorities in the right order. I read somewhere "You'll never say on your deathbed, "I wish I had worked more."

Years ago I had an opportunity to go up the work ladder. I chose to go wide instead of up because I didn't want to become an administrator further removed from the reasons I got into my job in the 1st place. I have never regretted that decision. I don't think you'll regret your decision. I am happy for you.

Upward mobility does not = happiness. In fact usually the opposite.

hard choices
 

I feel you have bought yourself time with a side of peace. Good Luck, Ken in Texas.

I am wondering if you ever tried acetyl carnitine?

This may help with the fatigue. The carnitine enables the mitochondria to move in fatty acids for energy if glucose is low.
It can strengthen heart muscle, and skeletal muscle and provide some energy.

Start at 500mg a day and increase by 500mg /week and see if you get benefits up to 2000mg a day. Take in divided doses, as GI absorption reaches a limit maximum per dose.

some studies:
http://www.ncbi.nlm.nih.gov/pubmed/15616239

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2430690/

I did at the outset for about six months but it was rotated out. Perhaps I will rotate it back in.

Yeah, I'll rotate it back in. Why not, eh?


Icelander- couldn't agree more. There was only so high I was willing to go on said ladder and it would have been for my family. This choice makes more sense for my family than any monetary one, though.

Ken- It is indeed the proper choice. I have a rigorous work ethic and a boneheaded style at times that can work against as much as for me. I'm just glad I didn't wait to make a call like this until it "had" to be done. Perhaps this will offer me a glimpse at halting progression a bit.

Pinky- I agree, work has always been a function of necessity for me. With two pipsqueeks it alters that attitude a bit. Still, I often muse that simpler times were likely where my soul belonged, not the bottom line margins mean everything 21st century. But here I am, peephole open and amazed. So it goes.

Debi, I have high hopes and will certainly keep jabbering away.

To infinity, and beyond!

Jon

A reference to Kurt Vonnegut?
 

(And) So it goes... Were you channeling Kurt Vonnegut in your post?:D I understand this has nothing to do with the topic at hand but I couldn't resist knowing you are a fan.

between that and the peephole comment, yes I was, just a tad. ;)

My husband decided 28 years ago that he wanted to spend more time with the family and less time at work. He moved from data processing manager to consultant, working 3-4 days a week. We were very fortunate and it worked out, we always seemed to have enough. As the years went by he was offered very tempting jobs but never wanted to give up that much of his life to work. He finally took a job, but works at home and sets his own schedule. They know he is not interested in any promotion. He has been paid for knowing more about the field he is in than most other people. I suspect that you, Jon, are capable of knowing more about your field than your coworkers and will have a secure place even if you bypass the ladder. There are advantages in being the one who can synthesize all the disparate bits of information and the skill is in short supply from what I hear.

All any of us really has is time and the more of it you can save for the important things the more successful you will have been in the end. If increasing disability should be your lot, and I sincerely pray it is not, why should your job have gotten the best you have left to give?

I guess I finally got it through my head that exact thing, Susanne. I've known for some time I was only likely to travel so far for a few reasons, neuropathy set it at a different level. I had left doors ajar hoping for improvement. Now I feel it is more important to get more quality time. It has been in far too short supply.

Besides, it is not as if I couldn't reverse course if I improved, but as I told a friend at work - if I mention that remind me I am likely forfeiting anything I gained.

It was rewarding that to this point my experience was easy. I was greeted with understanding and respect. The big cheese was pragmatic more than anything, measuring the gain in the new place over any loss at the old. Fine by me.

My modest goal is a few more quality family hours a week. My large goal is Family game night and cooking dinner a few nights a week.

It is not something that is known office wide yet. That is going to be an interesting onion.

Jon......you will not regret your choice. I've had to quit my job. My youngest of four kids is in his senior year. I am quite disabled, but happy that I can give him my undivided attention when he needs it!! Blessings!

Jon,

Take that Quality Time, utilise it fully to the best of your abilities. Make wonderful memories for your wife, children and yourself. Cook, have Family Game Night!

We all have a limited capacity for carrying out tasks, you are prioritising well.

Dave.

For what its worth I've known healthy in their people 30's & early 40's that took a "sideways position" that has less room for advancement to spend more time with their families.

Myself I could have made more $ but it would have been less time at home. I wouldn't trade my time spent with our daughter at the basketball games & practices, swimming practices & meets, piano lessons etc for more $ in the bank.

I hope it works our well for you and you find relief.

Remembering my dad
 

My dad told me in tipical Oklahoma fashion "all you are going to make out of life is a living". He had a mangled hand from childhood(farm machinery) so his work was here and there as he could fimd it. Yes we were poor but there is no stigma attached if you don't allow it. Back to my point, I really had the opportunity to understand my dad. We would spend time talking about philosophy, biology, nature, he taught me all he had to give and his last lesson was about how to die. I wouldn't trade my dad for seven miles of beachfront property and a Bently dealership. Ken in Texas.

Jon,
Ill or not, you made a good decision.
Lessening your stress and spending time with family will always be the right choice in life and I respect you for not waiting until you were ready to drop before making the decision.

When I got ill, I Had to make the tough decision of stepping down from a mgmt position( that I loved) and went back to a staff decision. It was so difficult to make that decision but I wasnt being fair to the folks in my department or to my husband. I stayed in staff position for a year then ran out of short term disability benefits time and was forced to "retire" to full time disability.

Jon, if you think that one day you may be unable to work full time, please look into your companies disability policies. I was so naive, I did not realize I would lose my job because I was working a less than full time schedule. I thought I could move to part time permanently but my company policy did not allow it. If hired for full time, Inhad to work full time. Once I was first sick and fell into the short time disability category, I did not know I was on a disability continuum. Now, this was a huge company, your company may different.

Thanks for keeping us informed.
Diandra

Primary Physician appt
 

Down more weight, blood work mighty. My B12 was 1000 despite a three week break from supplementing. I think it is safe to knock that off the list of issues contributing to my neuropathy.

My A1C is now 5.7. I am rather thrilled with that. Back, back, back it was unsightly. I'd hate to misquote, so I won't.

My primary sees no point in a punch biopsy, as we treat nerve pain the same. I ran with that crack in the door pointing out that it is not enough and I am doing Herculean work. It appears pain management may be the next step, though I see my neurologist at the end of the month and between seeing him and work changes I'd like to see how that shakes out first.

I don't quite understand what else he thinks I could do. I understand that prescribing "heavier" substances invites scrutiny, but it is not as if I have not attempted to address this with everything I have.

I want more quality in my life. If that means stronger medication, I can accept that at this point. I think my rant is becoming increasingly circular. First and foremost, I'd like the biopsy. While I understand this all could still be related to my diabetes it doesn't smell that way to me.

Anyway..
Frustrated, buzzing, burning with a side salad of shooting pains,

Jon

Hey Jon
 

His thing is I have confirmed long fiber neuropathy via emg/ncs. I think it is worth knowing there is more, if there is.

if that is what you want that is what you should get. Having a skin punch biopsy now at the least would set a base line for this period of time against which future skin punch biopsies could be compared to determine your progress in either healing or progressing in the disease.

Better, context applied of course
 

I am now finishing my third week in my new position.

My stress is dramatically reduced. I regularly was passing out after work. This week Wednesday was the first time happened since the move. I am "pleased" with this. I didn't expect the world to flip. In many ways it has, though.

I was offered my choice of desks. One is a window seat overlooking Lake Erie. I watched the sun set the most beautiful magenta last night. It was like a pad of butter on a hot potato of the horizon, sinking and sliding down. So peaceful.

The weather jumping up and down with high winds has challenged me physically. My left ankle refused my attempts to rotate it this morning, like a petulant child at the toy store it was.

So it goes.

I fully grasp how difficult it is to put stress and anxiety to the side while dealing with this brutal illness. I marvel that I was willing to bang my head against the anvil of strife, stress and pain for so long without making the adjustment at work.

I credit the work ethic instilled by my parental units, but I should have used the good sense they bequeathed as well. Better late than never, I suppose.

I encourage everyone to make any change possible, large or small, to improve your life and condition.

I did have to leave early last week two days- forgot that until I was wrapping up- but this condition does that, eh?

I plod on, wishing you all the best.

Jon