Jazz T-Bone: The homepage for Joe Jackson

Friday, April 24, 2009

Hey guys. Time for an update. How about the typical good news/bad news format?

The good news is that it appears I've really laid an ass whoopin on big bad RA, for the time being:

- I'm 99.5% asymptomatic

- I've had no real setbacks since last November

- I've been off Prednisone since mid-March

- I'm down to 200 pounds, meaning I've lost 45 pounds since last summer

That's a lot of good news right?

Well I'll have time to celebrate later, because here's the bad news that I've essentially kept under wraps for the last month and a half:

- I found out in the middle of March that Air Force Informal Physical Evaluation Board made the decision to medically retire me from the Air Force.

What a shock, right?

what I did not mention in earlier entries is that my medical board package, which was written up in spring 2008, sat on somebody's desk for about six months and finally got turned in in November. I didn't mention it because it didn't even occur to me that having come so far in my recovery that the air force would dream of retiring me.

Well the local Bolling Air Force Base medical evaluation board saw it that way, and moved to return me to duty - short for, "you're not leaving, get back to work!"

But that's just the preliminary body that looks at boards - the Informal Physical evaluation Board (IPEB) is the one that makes actual determinations on the ability of the member to return to duty.

In any case, I received word in March, and was told that I would have the opportunity to appeal. I immedately stated that I would appeal, and I signed the paperword to that effect. I was told that I would hear back in a couple of weeks and probably travel to Lackland AFB in San Antonio for the appeal 2-3 months out.

I first went to the local Area defense Counsel to get advice about getting representation for the appeal. The ADC didn't know anything about it so I contacted my PEB liason officer, but before whe could get back to me I got the email from the PEB at Lackland stating that my hearing would be in three weeks (!!).

Also on the email was a phone number for the Defense Counsel office for the PEB. I contacted them and then exchanged emails with one of the attorneys. I laid out the details of my case, asked if it was a slam dunk, and asked if it's not would I have any advantage by hiring a civilian attorney.

He wrote back stating that no, my case was not a slam dunk, but that the AF attorneys in the office knew the court and worked cases there every day, whereas a civilian attorney, even one specializing in disability, probably had very limited experience with this particular board.

He stated that even though I was free of symptoms, the critical factor that the board was going to focus on was my deployability. So an essential part of my defense would be to have letters from my Commander, Career Field Manager, Squadron Superintendent and Chief stating mitigating factors regarding my and my unit's deployment future/history, etc.

Now for those of you not familiar with the military, "deploy" is a specific term that is different than "TDY." Most civilians think deployment is characterized by being in a hazardous duty, that's not so. Deployment differs from TDY in that 1)deployment is into an AOR, and 2) deployment is longer than 30 days.

So the fact the the Note went into AOR for a week in 2002 doesn't count, even though we were in a combat zone. And that's a GOOD THING, because what it does is allow me to say the "The Airmen of Note has never, in it's 59-year career, deployed."

Another factor is that the AF Band has to have a certain number of musicians stationed in DC to be available for the State Funeral Plan which, technically, is the primary, congressionally-mandated mission of the band. And that's a big reason why the Note has not gone out for extended deployments overseas.

So I got all the letters written, dealt with some stuff with my medical records (ensuring they stated that I was currently healthy, recording my current weight, and getting a new letter from my Rheumatologist) and printed out a copy of my fitness test score from January.

And I traveled down here to Lackland on Sunday, and have met with attorney twice for a total of about two hours. The rest of the time I've been waiting, going to the gym, watching movies...

To make a long story short, I'm sitting in my room on base (right across the street from where I went to Basic Training 17 1/2 years ago!) waiting for the hearing, which is scheduled in 50 minutes.

I'm not that nervous. I've got this thing set up in my mind that if it doesn't go my way, bring on the future. My experience is things like this open doors that one would never expect to see open. And if you're wallowing in regret you might miss that opportunity.

But I am definitely in suspense as to what is going to happen. You guys are lucky, you get to scroll down a couple of inches and see what happened.

All right, I'm going in. Jackson out.

********************************************************************

And I'm back.

It was a quick decision: I'm staying in!

So now it's all good news.

Thanks to everyone for your support, it really helps. Now - time to pack up and get back to DC...

Wednesday, February 11, 2009

Howdy everyone!

Well I am happy to say that I have continued to get better and better!

I'm still on the Prednisone taper program, but I have made it to 2mg per day and I go to 1 per day on Monday. The doc also increased Humira to 1 dose every ten days, and I think that's been effective.

Getting down under 5mg/day of Prednisone has helped me lose weight, I'm currently down to 220 lbs after being up to about 245 back in May. I hope to get to 200 or less.

I have continued the heavy exercise program, in fact here is a chart of my caloric burning over the last two months:

As I mentioned in the last post I was approved to march in the Inaugural Parade in January, and I did so. Very exciting, not just because of the guy that got elected but because marching in the parade, in fact doing any marching at all was not something I thought I would ever be able to do just one year ago.

The rehearsals, run-through and the parade itself were very long, cold, and in the case of the rehearsals, very wet! But the real stress is the actual marching.

When people watch folks marching, they generally see walking. But real marching means your legs and feet are flexed, you are rolling your feet and gliding along so that the torso does not move. In terms of a cardiovascular event, I would rate marching as equivalent to running about 6 MPH (if you're doing it right). Plus you are playing, so it's kind of like running 6MPH while holding your breath.

Anyway, you end up marching about 5 miles including the que, the parade and the march to the recovery zone. I got through the parade OK. My feet and ankles were very, very tired and they hurt. But the next day I had no RA pain at all.

So things are going great for me arthritis-wise! I'll check in in another few months or so.

Thursday November 6, 2008

I know it's been a while since I posted so I thought I would update everyone.

Things are generally where they were back in the Summer, which is to say that I am 95% pain-free but still feeling sick on a daily basis and trying very hard to get off Prednisone.

The plan in the summer was to continue tapering, however I hit a wall and relapsed, got pretty flared up. So they put me back up to 10 with the plan of going down 1 mg per day every two weeks, which puts me at zero sometime after the beginning of the year.

This time I deviated from what they told me and decided, as a result of some research of my own that the percentage of the reduction is much more significant than the amount. In other words, as far as my body is concerned, going from five to four is a much bigger reduction than going from ten to nine.

So I went down 1 mg per WEEK until I got to 5, and since then I'm going down 10% per week rather than 1 mg. That's from 5 to 4.5 and now I'm at 4 and still have not flared up. I am going to ask for liquid Prednisone and use a syringe to measure out the precise amounts of X minus 10%, so the next step will be 4, and then 3.65, then 3.3, then 3 - you get the idea.

Eventually I'll get to 1 and then I'll start alternating days going 1, 0, 2, 0, 1 etc.

So the sickness associated with Prednisone and Methotrexate (which is bad during the period 48 to 72 hours after I take the Methotrexate) is the worst thing that's happening to me, which is a great thing...

...BECAUSE my joints are in really, really good shape right now. As of today, since we returned from UK in July, I have been to the gym 59 times! At first it was doing things like 20 or 30 minutes on the elliptical trainer.

But starting in September I pushed my program up a few levels and right now I am up to doing around an hour of vigorous cardio on the triner, the bike and even running on the treadmill and then on top of that I'm doing between 1500 and 3000 meters in the pool, all crawl with kick turns.

BUT, and dig this, I've averaged about 1200 calories net (food minus exercise) per day since late August and I have lost a total of four pounds as of this morning. Down to a not-svelte 234.

So let me tell you something about Prednisone, people - that stuff does some crazy shit to your body! All I can figure is that it does something to your metabolism that diverts all incoming calories to storage and prevents it from being available for energy. Every day after these workouts I do not feel strong or invigorated, I feel absolutely exhausted and fatigued. I'm essentially gutting my way through it (yuck yuck).

But all in all I absolutely cannot complain. For the first time since I got sick I feel like I can do something proactive to rehab and that I'm not sitting around waiting for the therapy de jour to work. And that feeling of power is feeding something deeper than all of the sickness and nausea in the world can't being down.

So one of my goals over the past 8 months was to get my body to the point where I can march in the Presidential Inaugural Parade in January 2009. And last week I stood for inspection and lo and behold I have done it, I will be on the review-stand end of the second row in January. And to top it off the guy I have been supporting for President since he was in the primary scrum back in 2007 actually won the nomination and then the election!

So unless I hit a major speed bump, I will have the profound honor of marching in the historic Inauguration of the first black president of the United States of America. Sorry to any of you who are not Obama supporters, but I am and I can say that this parade will be a really big deal for me.

Peace.

Wednesday August 20, 2008

Ten Steps Forward, One Step Back

Over the last month I have felt fantastic!

Up until this week I have had no bad days - I've been to the gym 15 times in the last 24 days and have gotten my wind and some strength and a lot of flexibility back. No setbacks from the gym visits!

So last week Rheumy doc instructed me to cut my Prednisone dose in half from 10 to 5, and to do it again in two weeks, again two weeks after that, and then cessate entirely beginning September 22.

I am telling you I will be happy to be off of long-term, high-dose Prednisone therapy. It is a wonderful, terrible drug.

The side story is that I am sick from Prednisone withdrawal; my muscles ache and my neck is out big-time and I'm extremely fatigued. But that comes with the territory and I am truly overjoyed that my joints have not flared up as a result of the taper. Knock on wood.

The last year has felt like I stepped into a time capsule. It's like it was some kind of throwaway. It's just really odd to remember that just eight months ago I couldn't even walk.

I'm still recovering in terms of getting ahead on my work; I think I did a pretty good job ensuring that all of the responsibilities of my job of Director with the Note were taken care while I was sick, but I just wasn't able to get out in front in terms of planning for new projects and musical directions like I want to.

The main thing is that through those miserable 12 months I'm pretty sure I managed not to make my family and everyone around me miserable. So along with all of the gains in perspective, that's the best thing I take away from all of this.

Many many thanks to all of you who have given me your strength and thoughts over the past year. Couldn't have done it without you!

- Big Joe

Thursday July 24, 2008

New Diagnosis...

Helloo!

We got back from our UK trip last week (you can see the video, up on this site).

My body held together MARVELOUSLY! And in face of LOADS of walking, at least in the last five days of the trip in London. I estimate conservatively that I walked at least three miles per day in London. Some days I'm certain I did six or seven.

I also rode horses in Cumbria with my daughter Josette. My knees felt like they were going to explode from the second I got on to the second I got off but I did it!

(proof)

Anyways, we came back and I had an appointment with Rheumy the next day.

Dr. O'Brien was back from his deployment. He examined me and decided I look pretty good though not perfect. I told him that I was not quite noticing any changes as a result of Humira but that it was tough to tell because I felt pretty good but that could be because of the Prednisone.

He agreed and told me he wanted me to stay at the current 10mg/day Prednisone dose for another month since due to my history there was a very good chance that I would immediately start to flare if we started the taper now before Humira had had it's full 2-3 months of time to start working.

He also told me that based on my visit a few months ago my blood numbers have changed and I now have full blown Rheumatoid Arthritis. Which of course doesn't change how I feel or my treatment plan. All it changes is it makes it easier to talk to people about it and it possibly changes some factors regarding my eventual retirement from the Air Force.

I guess there's news on that front as well. My primary care manager finally agreed to place me on profile from the Air Force physical training program as a result of my symptoms -- but only if I agreed to accept a medical examination board. Of course I agreed, I tried working out in April and it just made me worse plus rheumy said "bad idea," working out on inflamed joints makes them worse, and every day my joints are inflamed is one day closer to having joint replacement surgery.

I completed the narrative a couple of months ago, I still have not heard anything and Rheumy doc said they have not contacted him to write an addenda.

The result of the board could be nothing, it could be a recommendation to limit my duties, or it could be a recommendation for medical retirement. But based on the fact that I have managed not to miss significant work I don't think that's going to happen. I'll let everyone know if I hear anything more.

Last but not least, the really exciting news. Over the last week (really, since the last rheumatology appointment) there has been a noticeable improvement in my joint function, especially in my arms.

The range of motion in my wrists is about 75 degrees extension and almost 90% flexion with much less pain.

In fact I have felt comfortable on the elliptical trainer and (drum roll) even went to a yoga class last night. Don't laugh. Yoga is ridiculously hard if you have RA. Two of the basic moves of yoga are downward dog and plank:

both of which require you put a lot of weight on extended wrists.

Well, that's not going to happen anytime soon, so I did everything but these poses last night. I am trying to remember that RA is not like injuries, you don't incrementally push the joints to achieve range of motion and strength. You allow the medication to do its work and THEN you can start to exercise the joint.

So anyway I am very excited (and sore!).

More later, people!

Friday June 6, 2008

Took my first injection of Humira on Monday - have not noticed any immediate effects however doc says it takes 2-3 month before you notice anything.

In the meantime he put me back up to 10mg Prednisone daily and told me to just stay there and stop whining. Alright I made up that last bit.

But he did indicate that it's important to keep my priorities straight. Per Terence Dwyer, when one allows the inflammation to continue (even in favor of taking less Prednisone, admittedly a toxic drug when taken long term), they are doing permanent damage to their joints, which can then spread into adjacent organs.

In fact I read a recent NEJM study that said that 29% of Rheumatoid Arthritis patients who suffered continued uncontrolled inflammation weren't even alive in ten years. (sorry, no cite)

The result of the drainage/knee, ankle injections and added Prednisone is that most of my joints have subsided considerably with the exception of my left hip, which has inferred as muscle spasms in my lower left back and also in my bowel.

But my ankles and knees are about 90% pain free so I'll take that.

In other news the Air Force is boarding me, that probably occurs sometime this summer so we'll see the outcome of that. My hope is that they'll determine that I can continue doing my job.

Friday May 30, 2008

Hello all!

Lots of news on the medical front.

As I have continued to taper my Prednisone dose, my average pain level has risen. I recently started a chart of my maximum pain level each day along with my Methotrexate and Prednisone dose:

(Green is Prednisone dose, Purple is Methotrexate, Orange is Humira, Red is pain level from 1 to 10. Click on the chart to see a higher-resolution version.)

This last monday, I went from 7.5mg per day to 5 mg per day, and as a result I became super fatigued and feeling sick on Monday & Tuesday, and then super flared-up on Wednesday and Thursday. Both my ankles, right knee, wrists, left hip have been flared up and my left lower back has been spasming along with my left buttocks.

I finally figured out that I needed to call the Rheumatologist; I got nurse Stratton on the phone. Let's just say Ms. Stratton was not happy with me for letting it go this far. She listened to my situation and then told me to come right in. She said my doctor, Dr. O'Brien was deployed but she would find somebody to see me when i got there.

Drove to Bethesda right away and moseyed down to Rheumatology. It was quite a hike; i knew it was coming so I had brought a crutch to try to minimize stress on my ankles. Checked in, I was called back and was delighted to learn I would be seen by the 0-6 head of the department (and the highest ranking rheumatologist in the U.S. military), Dr. Terence Dwyer, along with his intern.

Long story short, here's the result of the appointment:

They drained about 4 ounces of fluid from my right knee,
They injected my knee and both of my ankles with cortisone (does not feel good)
They told me to go back up to 20mg Prednisone and then once the inflammation is reduced do a quick taper back to the 5-7 area.
We decided that Methotrexate is not getting it done, and it was determined that I would start a new medicaiton to supplement Methotrexate, and anti-TNF drug called Humira (Adalimumab).
Blood drawn for labs, a urine test and a tuberculosis test (that must be negative in order to start Humira.)

I go back on Monday to get the result of the TB test, and then back to rheumatology to get the patient education and first injection of Humira.

This particular medication you inject once ever two weeks.

I got the impression from how the doc was talking that this was an expensive medication. Lo and behold, I get on the net when I got home and this stuff is, get this, a whopping $1,400 per two 40mg synynges!

If there was ever an example in favor of socialized medicine, this is it. We have a neighbor with rheumatoid arthritis and they do not have health insurance. To think that she simply does not have access to the best medicines and might therefore suffer because of it, to me is an absolute travesty. Thank goodness for the Air Force.

I'll post in next week to let ya'll know how I have responded to all of this. Ciao.

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