Friday December 28, 2007

Uh - 3:30 AM, I've slept all I can.

Hands are horrible, i'll keep it short.

My LEGS have been really good though!!  I had a good day Christmas and a good day yesterday.  I even took a (slow, shuffling) walk with Linda and Josette on Tuesday and I went to the GYM by God yesterday.  I did 12 minutes on the elliptical slow with no resistance and then I bobbed around in the pool for 20 minutes.  It feels ridiculous, like im not getting a damn thing done - takes me 40 seconds to swim the length of the pool.  But Im staying focused on going slow but being consistent and determined.  I had to leave the pool because my bathing suit clad body was creating a frenzy with the ladies.

The big news is I went to instrument repairman Jeff Bonk's house on Wednesday.  We spent a couple of hours together talking about the design of the ergo handle that he is designing for me to hold the trombone with my left hand.  These days even with the 'roids I usually cannot bend my left elbow enough to pull the horn to my face.  So we're going for something that:

a. Puts the left hand and left arm in anatomical neutral, directly in front of the body,

b. has a big, soft grip that flanges and contours to the fingers, and 

c. holds and balances the weight of the horn securely.

Jeff's great to work with, he's very creative and he loves a challenge.  He was the trombone guy at Chuck Levins Washington Music but he quit because the long hours were preventing him from his playing career and because he didnt have time to do the specialized work for high profile guys that he wanted (he told me that Matt Vaughn had wanted to drive down for him to do some work and Jeff had to turn him down...).

Anyway Jeff added a couple of factors to the design of this thing:

d. The way the device attaches to the trombone has to be secure and likely be connected to at least two braces, and

e. The less it touches the cork barrel on the slide the less it will effect the sound of the horn.

Of course the obvious solution is that there is a triangle between the cork barrel and the top cross brace of the slide, and he can have all that space since I no longer need to stick my left hand in there.

Anyway we talked for a while and he took measurements.  Then we went to a bike shop and bought some aluminum mountain bike handlebars and lots of grips.  Then we went back and we made some sketches and he came up with a basic design, it's actually going to look kind of like a letter "Z" with the handle located under the bell about 5 inches under the bottom slide tube.  Obviously the critical and most difficult part will be how it connects to the horn.  It needs to be strong but not break the horn, AND it needs to be removable so the horn can still get into a case.

its going to be largely a working process - he's going to make something, then we're going to adjust it, then we're going to adjust it etc.  Then he will probably use that shape and design and make a finished product.  I suggested to him that an eventual third generation could have adjustable joints and length and he could likely manufacture them and sell them to other handicapped/physically challenged players without having to custom fit it to the player.

I'll finish with a "Christmas Carol" moment.  Our middle grandson Tony (8) is a real sweet kid, real people pleaser.  Anyway we were hanging out Monday and Linda asked them all what they wanted for Christmas and this little guy said "I just want papa to get better."  Real tear-jerker moment, right?  I thanked him deeply but I'll be damned if my first inner reaction was that I was stealing his Christmas joy and that he should wish for a toy or something.  But I put that aside; what he said it signified the great lesson of life which is to live in empathy for your fellow man.

Well, what do you know if I didn't get up early Tuesday morning and have about 6 or 8 hours of mostly very little pain!!  I'm not normally one to believe in miracles but I took it, and it was great to see the look on his face when I told him I thought his Christmas wish came through!!

Monday December 24, 2007

Holy cow the emails are pouring in since I put the blog up.  You know I really love you people out there who are hoping and praying for me.  Thank you.  I swear musicians are the most caring generous people in the world.  Everybody has their own problems but when they hear someone else is in trouble they always reach out.  That's really awesome, I'm truly honored to be in this profession and blessed to have such incredible people as my colleagues.

You know the Prednisone worries me.  I feel like I take it and it really works on the inflammation for about ten hours.  In fact it reduces the inflammation so dramatically that all of my ligaments and tendons are really loose and popping a lot in my shoulders/knees/ankles.

But then after about 10-12 hours it starts to wear off.  I feel like I'm just taking some sort of band aid, kind of like Motrin on, well, steroids.  But I know that the steroid regimen is a precursor to a second line treatment so I'll just be patient and do what the doc says, I meet with him 2nd week of January.

Hey Merry Christmas everybody.  Even if you don't celebrate Christmas, well you know what day it is and I hope that day is a good one for you.  We have a complicated one around here, as most of you know we have custody of my step-daughters three young kids (their family kind of fell apart and Social Services gave us the chance to step in instead of them ending up in foster care) so we do presents and stuff with them, then their mom comes over and does presents with them, then their dad and his gf picks them up at 1 PM and take them to his house.  Meanwhile Jimmy and Josette have some awesome gifts this year, like the best ever.  I'm really excited.

Thanks again for all the love and support, I return it right back to you all.

Sunday December 23, 2007

Still pretty rough in the mornings.  Knees are getting worse.

I haven't played in a month but I have been going in a leading rehearsal and doing all of my work as the Director.  Now the band is on blanket leave until January.  I ended up missing three gigs in December.

I'm meeting with local horn repair guy Jeff Bonk next week.  We're going to try to fabricate an extension that allows me to hold the horn with my left hand a foot in front of my solar plexus, held vertically in anatomical neutral.  Hopefully we can come up with some sort of answer.

I already have purchased an ergobone but it's just not going to work for me.  For one thing my hands are so bad that fiddling with the mount when I pick up my horn 25 times during a gig it ends up hurting and it takes too long.  I want something that is permanently mounted to the horn that just lets me hold it with my arms in an accessible position.  I am really hoping to salvage my trombone career.

Wednesday December 19, 2007

Not doing so good now.  The morning have become a bit hellish again.  But not as bad as a week ago.  I'm still feeling fairly good in the afternoons.

I saw an internist at Andrews yesterday.  She examined me and looked over all of my tests.  She said I needed to call Rheumy at Bethesda and that they would probably adjust my Prednisone dose.  She also looked at my panels and said that I most certainly had Rheumatoid Arthritis and asked if the Rheumatologist had given me a diagnosis.  I replied that they had not and she suggested that I ask them about it.

I got in touch with the Rheumy on-call doc this morning.  He elevated my prednisone dose.  I asked him about Rheumatoid Arthritis and he said, "yes, well RA certainly seems the case here, however please understand that our approach in this clinic is that we like to take our time making those kinds of diagnoses - once you use the "RA" word you can't take it back and there is a whole bunch of administrative things that pretty much automatically happen as a result that are not necessarily good for you."

I called the internist back and told her this and she agreed - there just isn't any point in jumping the gun especially when somebody's career (mine) is at stake.

So I feel very taken care of by the AF right now.  I know if they have to kick me out I'll get a med retirement and be taken care of the rest of my days.  But I also know there's a lot of people trying to give me every chance to make a recovery and finish my career out.

Thursday December 13, 2007

Finally some things have begun shaking out on the medical front.  Last weekend I was really going down fast, and Tuesday night Linda took me to the ER.  I was really struggling to stand and to walk, and I was feeling dehydrated.  I ended up staying at the Andrews ER all night.  They eventually called in the Family Practice doctor to consult and see if they were going to admit me.  Meanwhile they did all new X-Rays, bloods, exam, everything.  They got me some fluids in an IV, then they tried to give me some ridiculous anti inflammatory injection which did nothing.  Then they gave me morphine which did little.  

The FP doc came down and she was VERY helpful.  Basically she said that they would admit me, however they were certain that any answers to my problems were back at  Rheumatology, and they don't have Rheumy at Andrews.  So I told her that I had been to Rheumy and they said that my R factor was up but that it wasn't indicative, and she responded that she thought they would respond differently now because there were some other blood test indicators that were very elevated, notably my SED rate which was off the charts, and my Anti-CCP numbers.

She got me an appointment at Bethesda Rheumy later that day (it was now Wednesday morning) and refilled my T3 which had run out before we had gone to Montgomery.

I made it to Bethesda the next day and moseyed my ass on down to Rheumy (I don't really walk anywhere, I mosey).  They were very concerned with my legs, especially my ankles which looked like softballs.  The doc put big needles in them to pull out fluids and then shot them up with steroids.  They also put me on the oral steroid prednisone with the goal of clearing up the inflammation so they can start working with some other drugs to address the underlying problem.  Earlier today Brian said he saw my name on the Mitchell Report.

Well the combination of everything they did worked wonders and I am in relatively good shape today.  I just cannot express what a relief it is to get out from under that.  The last ten days have just been a nightmare.

Tuesday December 4, 2007

UHHHH!  It's 3:00 AM and I am DONE sleeping after just 4 hours of sleep.  Every time I wake up it's like my legs are paralyzed.  They are so weak and moving them is sheer pain.  One of the hardest things about getting out of bed is getting the damn covers off my legs.  I can't generate enough strength to kick them off, and every time I move every joint in my whole body, from my neck to my feet, sounds off LOUD!

I am having trouble standing up.  I rock in order to get enough momentum to get my body out over my legs, but then the push up to full standing is simply hell on my knees.  My legs shake when I push up and then when I walk it's stiff-legged and I can't push off with my feet.  The kids have started calling me Frankenstein.  Then Josette informs them "it's actually Frankenstein's monster you are tlaking about" which of course makes me feel much better.

The trip to Montgomery was RIDICULOUS.  I don't see how in the world I made it.  I made it through the gigs holding the horn by the edge of the bell with my left hand:

The problem is that my hands are so bad that the left one kept cramping.  I made it through the gigs but after each one my left hand and left shoulder were really bad, then I would get up the next day and spend all day recovering for the next gig.

But the worst part of it was getting around.  Because of my knee weakness and the pain in my feet, I am reduced these days to shuffling around like a person twice my age.  Lifting my legs over curbs and even an occasional thick rug represent actions of some consequence and concern.  The trip from my billeting room at Maxwell down into the lobby and out to the vans was a 10-minute journey.  It's just so ridiculous.  Just six months ago I was running three miles on a treadmill at 7-8 MPH, 5 morning a week.  I am not a happy camper.

Although I have to admit there are still small joys.  Once the meds start to do their job and mitigate the howling hounds of pain, it's SO delightfully quiet and peaceful in our house with the whole family slumbering away - just me, Sheila the cat, and an occasional mouse; nocturnal creatures together in the dark.

I have told Dudley that I will not be able to play our remaining jobs this year.  I will get an appointment with my PCM to get the profile.  I just can't continue to gut it out on gigs like this, holding the damn horn on the bell.  Getting appointments with the PCM on Bolling is next to impossible.  There's just no appointments.  I have managed to communicate with her via email but she's just swamped.  I believe she has like 1,500 patients she's responsible for.  

However the vast, vast majority of the military medical system, most notably specialists/equipment/testing, is simply superior.  Imagine doctors that conduct tests completely without regard to the monetary costs and solely for medical reasons.  Hard to imagine in the modern HMO world where life-saving tests and procedures are routinely denied by HMOs trying to maximize profits for their shareholders.  While it is not perfect, my experience with the military health system (which our lovely federal elected representatives rely on, by the way) is a testament that socialized health care is, without a doubt, far superior to the money-grubbing insurance companies doling out life and death based on the bottom line.

Thursday November 22, 2007 - THANKSGIVING

My shoulders and wrists are crazy bad, and my elbows are jacked.  However I medded up and joined Jimmy, Josette and Linda on a hike on Billy Goat Trail.  My right ankle has been bad, but the hike made me really aware that my knees DO NOT feel very strong or secure.  Hopefully I can chalk this up to not having gone to the gym regularly for a while.

There's this pattern emerging where I wake up with horrible pain and stiffness throughout my body, take meds and a bath and get moving, and then I get stronger and more pain-free as the day progresses.  However I go to bed and wake up and the whole thing starts over.  It's pretty maddening if I project this in the future.  The only answer is to stay in the present and accept and value any of the rare moments of normalcy.

Cowboys beat the Jets badly today.

Next weekend we travel to Montgomery AL for the annual holiday Glenn Miller concert.  I am very concerned about whether I will be able to play the gigs, and I am not looking forward to the outbound and inbound C130 trips.

Sunday November 18, 2007

It's about 5 AM and I slept as much as I could stand.  I  get to the point where the pain wakes me up a half dozen times and then I just have to get up and take some OTCs and try to get loosened up with a hot bath.  The rest of the house is asleep, it's just me here at the computer.

We had an Officer Club job on Bolling last night, just a 20-minute show, no dance.  My shoulders were really bothering me yesterday however my elbows were a little more flexible than they had been.  I was able to make it through the job.  No conducting, thankfully, there's no way I could lift either of my arms past shoulder height.

There's no way I can help with teardown.  My hands are bad and I can't really operate the latches on the cases, can't wrap cables, and with my shoulders I can't lift anything.  So as much as it chaps my butt I have to sit there and watch everyone else do the work.  

One of the hardest parts about all of this is that *I* was always that guy that jumped in and worked hard and long until the job is done.  Back when we were on setup crew Tim and I took pride as the fastest and ass-kickinest crew team.  Now I'm relegated to watching like some lame old man while everyone else does the work.  I know that's just defeatist mind chatter - I'm fine blocking it out but it's still there.

Back To Table of Contents

©2003, Joe Jackson. All rights reserved.