Dealing with the Veteran’s Administration again . . .

I am currently trying, once again, to deal with the Veteran’s Administration (VA), to get my left femur replaced.  At this point in time, I have been trying for 38 years to get this problem fixed.

In all of that time, the standard response of the VA has been “the problem is not yet severe enough for us to justify the expense or risk of performing the procedure.”  What that means is, because the procedure would probably need to be repeated in 20 years, they are unwilling to do the corrective surgery before I am old enough to only qualify for it one time.

So, because I became disabled so young (aged 18), I have spent 38 years waiting for the chance to resume anything even remotely resembling a normal life – even though it would only require ONE surgery to deliver that option to me.

My new primary care doctor, at the VA Health clinic in Joplin, was willing to order a new MRI to evaluate the situation, and that has been scheduled for later this month.  However, based on the report of the preliminary X-rays before the MRI, I am not expecting them to agree to the procedure at this time.

IMHO, this is a completely upside down evaluation.  The VA is looking at how many times the procedure may need to be done throughout my lifetime – and what I am concerned about is my quality of life for however long I have left.  The last 38 years have been what should have been some of the most productive years of my life – and of them I’ve spent 28 years doing minimum wage labor, and the last 10 years I’ve been unemployable.  All of this despite the undeniable fact that nobody knows for sure when I will die – whether by an accident, illness, or natural causes.  Let’s not forget, it all started with a bone tumor, and that caused a permanent impairment to my immune system.

If the VA tells me later this month that they are still not willing to replace my femur, my wife is considering adding me to her medical insurance, just to attempt to get the surgery done.  I think that is still a long shot, but we’ll look at it.  If it isn’t viable, I’m considering whether it is time to consider a new body.  Continuing the downward spiral is certainly not going to be viable for very long, and since I do believe in a form of reincarnation, it is worth thinking about.

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Exposed a lie . . .

Yesterday was a very long, but ultimately worthwhile, day for us.  It was my first visit to the new VA Health clinic in Joplin.

Of course, being a new facility, it looked nice.  In fact, it’s so new that the installed TV’s weren’t hooked up to any programming, yet.  LOL! To me, that was actually a good thing – we didn’t have to sit through hours of TV commercials while waiting for my appointments.

Anyway, the new care team I’m working with is AMAZING!  Every member of the team is either a veteran, or directly connected to a veteran.  They all expressed that they want to treat every veteran the way they’d want their family to be treated.

A direct result of that was exposing a lie told by my previous care doctor.  The previous one had told me, many times, that the Imitrex he was giving me was the ONLY prescription for Imitrex he could write.  10mg tablets, 9 tablets per 90 days, no automatic refills.  Yesterday’s visit with the new doc was RUSHED – his nurse said the doc usually wants to spend 2-3 hours working with a new patient on the first visit (I got 15 minutes because of a scheduling glitch) – yet he heard my complaint about the Imitrex and had no qualms about writing a new prescription for Imitrex at 50mg, 18 tablets per MONTH, with auto refill.

I think, in the long term, this is going to be a better experience, with another positive change scheduled to happen in June.  That change will come from Congress, so we’ll see how it works.

Veteran’s Hospitals have a math problem . . .

Ok, first let me acknowledge that I DO understand that there are health issues to be concerned with.  Still – this goes way beyond health, into absurdity.

The specific problem I’m talking about is with the prescriptions for Imitrex that I’ve been getting.  Ever since I started getting it – they have only sent me 18 pills at a time, and limited me to one refill every 3 months.  About 2 weeks ago, I sent them a secure message asking for another refill.  So far, they have only given me 25mg tablets, but I know it is available in dosages as high as 100mg, so I asked if I could get either a higher dose, or more pills, or both, since I keep running out.

They replied that they limit the number of pills they send because they don’t want me to exceed the 200mg maximum dosage per day.  So, here is where they have a math problem.

They only send me 18 pills every 3 months.  It takes 8 25mg pills to REACH 200mg for a day.  Each of my migraines lasts 3-4 days, and I usually have about 3 migraines every month.  I run out of pills if – ONLY on days I have a migraine – I only take 1 pill each day.

To actually risk excessive dosage, I’d first have to have enough pills to TAKE an excessive dosage – because running out is a MISERABLE option.  So, 8 pills per day for 9 days a month for 3 months.  The ABSOLUTE minimum number of pills I need for a 3 month prescription is 216, IF I was taking 200mg per migraine day.  Some months I’d need as many as 336 at that dosage level.  Still, even at the minimum – the actual prescriptions they have given me have fallen short by almost 200 pills every 3 months.

And the fools wonder why I haven’t gotten enough help from their treatment protocol to be able to return to work.

New Rules . . .

I got a letter in the mail from the Social Security Administration today.  In it, they informed me that they have changed the rules for how they consider appeals to pending claims.

As of the date of the letter (last week), I have to be able to show that any new evidence I might submit to substantiate my claim IS DIRECTLY TIED TO THE TIME PERIOD in question for my claim.  Keeping a log of my migraines is now rendered irrelevant, unless I can document that the entire medical profession was aware that the medicines I was told to take to manage my hip/leg pain in 1980 (after the bone tumor surgery) were known to potentially cause the migraines I’m getting now.

Does anyone have access to a 1980 copy of the Physician’s Desk Reference?  I need a copy – the whole book, so they can’t claim that it came out of a different (later) copy.

Affordable Care Act … FAIL

I had planned to write a post today about our latest successes in home improvements to our 80+ year-old brick home.  However, I feel a real need to postpone that (it will be available tomorrow) so that I can bring you a new, freshly updated, rant about the state of health care insurance in the United States.

When the President shoved the ACA (aka: Obamacare) down our throats, the primary argument for it was that we should accept this “solution” because the existing health care system was broken and the solution would be an AFFORDABLE way to fix it.  The only people it is affordable for are the ones getting free coverage at everyone else’s expense.

Our health insurance rates have gone up every year, and we just got the notice of the change in benefits for my wife’s insurance options through the State of Kansas. The plan we’ve been on – just to cover her and me – went up $25 per WEEK from what we paid last year.  Keep in mind that we hardly USE this plan.  We didn’t meet our deductible on the plan last year until DECEMBER, and have not met it yet this year.  At the new rates, it almost seems cheaper to start paying cash, and pay the penalty at tax time for not having insurance.  Yes, I did the math – the increase alone amounts to $1300/yr.  Our combined pre-tax income is just over $50,000/yr.

As it is, I am seriously considering telling my wife to drop me from the coverage through her work, because  I get some form of care through the VA, and even if it is the worst health care in the US, it’s paid for.  That would return our premiums on HER coverage to about what we were paying before Obamacare took effect. Sure, the nearest full-service VA hospital with an ER would be either Wichita, KC, or Fayetteville, but with my DNR active they are all close enough to us for most urgent care needs.  That, and I think the VA care is sufficient to meet the legal test of “being insured” under Obamacare, for me.

Still need more thought, but that is the direction I’m leaning.

Some humor in a difficult day…

A few days ago I had my first visit with the Fayetteville, AR, VAMC Orthopedics Clinic about the possibility of getting my femur replaced.  Quite naturally, though possibly beneficially for me, the appointment came on the last of 14 consecutive days that each had storm activity in this area.  Oh, and I had a migraine.  I tried to get well-rested the day before, but it resulted in my being awake at 9pm (2100 hours) the night before, with an appointment at 10am – we didn’t leave Fayetteville until nearly 1330 (1:30pm) with a 3 hour drive still ahead to get home.  So, yes, it was a challenging day.

Still, there was humor to be found.  While we were leaving the X-ray clinic (the x-rays Mt. Vernon took didn’t include the whole femur, and the surgical site of the bone tumor wasn’t visible) a man walked up to me, stuck his hand out to shake, and said, “I do believe I flew cover for you guys back in the gulf.”  I got a confused look and said, “It couldn’t have been me – the only duty station I saw was in Germany.”

He pointed at the t-shirt I was wearing, and suddenly we both laughed.  In bright, yellow lettering it read – “USS ENTERPRISE” – he’d thought I served on the US Navy Air Craft Carrier – but under the letters was the far more recognizable silhouette of the STAR TREK Enterprise – NCC – 1701.

Note to self: do not wear Star Trek t-shirts to the VA hospital anymore.  Well, perhaps the ones with Mr. Spock’s photo . . .  (grin).

Anyhow, there is no update on whether or not I will be getting a new femur.  It might perhaps be an indication, though, that the doctor suggested a cane with a fore-arm brace, to be used on the strong side to take pressure off of the weak leg.  I almost feel like I might be reading to much into it, though.  Oh, well.  Time will tell.

Weight and VA update . . .

I had a quick trip to the VA this morning, to get the x-rays for evaluating my being a candidate for the femur replacement.  While I was there I stopped to visit with the dietician who runs the MOVE program (to help veterans with weight problems lose weight).  She remembered me, and how frustrated I was that I couldn’t seem to loose weight while following her program.

She took one look at me and her jaw literally dropped.  “CONGRATUATIONS!  You look great!”  (made my day, as well as hers)

We went ahead and did the whole tape measure around the middle, weight, and BMI eval just for grins and giggles – we both knew I’d made real progress – and my weight was officially 194.5 pounds. She did ask how I had finally started getting ahead of the weight, and I told her about discovering the paleo diet and the very slow, steady weight loss over the last 15 months or so, and she said that was actually the best way to do it.  Not only that, but losing the weight before surgery will help my recovery from the surgery whenever it happens.

Talked with the lawyer . . .

My lawyer called back this morning, and we talked over my concern and the response I wrote up to the doctor.  She approved everything I wrote, with the caveat that this may still initially cause trouble with Social Security over not complying with “doctor’s orders”.  Still, she feels that because it’s a matter of spiritual/religious faith, ultimately we’ll prevail.

It’s currently 56F degrees here, looking for a high in the low 70’s – so I shut off the heater and opened up the windows.  It’s SO NICE to have that option now!

Cholesterol check . . .

I’ve been sitting on this for over a week, waiting for a chance to talk to the lawyer who’s handling my claim for Social Security disability.  Unfortunately, she’s having health issues herself, and hasn’t returned my call yet.

Anyhow, through the last 5 years the doctor at the VA clinic has been “concerned” about my cholesterol levels and has wanted to put me on drugs to lower them.  This year, he didn’t even have a lab on-site to get the results from, but he went full-court press on pushing the statins just based on LAST YEAR’s results.

I swear, being an MD is nothing but legalized drug pushing anymore.

Anyhow, I told him I wanted to see what the results of the NEW blood work were before making any decision, and they could contact me with those results by email.

I got the email the next day.  My results were that the total cholesterol went up over 40 points.  Here is an excerpt of what he said:

“LDL (bad cholesterol) has gone up from 240 mg/dL to 280 mg/dL  Patient has been very resistant to taking statin drugs.  Complications of untreated high cholesterol including heart attack.  I would advise him taking ATORVASTATIN … in order to get his LDL down.  Possible side effects include muscle weakness, muscle pain.”

First – ATORVASTATIN is generic Lipitor.  Notice that the only side effects he mentions are muscle weakness and muscle pain – nothing about LIVER DAMAGE, which all the literature on the health websites claim is the #1 side effect.

Anyhow, I still haven’t talked to my lawyer, but I also haven’t been sleeping well for the last week, mostly because I’ve been stewing over this.  I still want to talk to my lawyer, but I think I have figured out what to say to the doctor.  It would go something like this:

Dear Doctor:  Please notice in my records that I am a Scientologist.  This affects much more than just my attitudes towards drugs that have psychiatric actions.  It is WHY I have an Advanced Directive AND a Living Will, both of which stipulate a DNR order.  It is my religious and spiritual belief that the end of this life is only an opportunity  to begin the next one.  I am happy to discuss health care options that affect the quality of life while I have it, but I have no interest in extending it.  If I have a heart attack, it will be the end of my life, and I’m comfortable with that.  I will not take anti-cholesterol drugs now or ever, and you will not ever bring it up again.

Well, I think that’s what I’d say.

Annual Physical . . .

Yesterday was my annual physical at the VA.  I have a few very interesting updates relating to that.

#1.)  The doctor was suitably impressed with my weight loss.  We’ve been trying for over 5 years to get my weight under control, but last year when I got my annual physical I weighed in at 237 pounds, and at the hospital in Fayetteville a few months earlier I had hit the magic number of 248.  He asked me last year what I had done to drop 11 pounds, and I told him about my starting the Paleo Diet.

Well, yesterday I weighed 199.3 – with my 6 pound tennis shoes on.  The weights I record in my progress notes other times I’ve blogged about my Paleo progress have been on my home scale without the shoes.  So, my actual weight is closer to 193.

#2.)  The neurologist I was seeing in Fayetteville told me it was alright to take Excedrin with the Imitrex when I need extra help with a migraine – but he didn’t tell me that he put it in my treatment records that he feels PART of my problem is my irregular sleep pattern.  I wish knowing that could help, but it actually doesn’t.  The migraines are part of the CAUSE of the irregular sleep pattern.  I can’t figure out which magic wand to waive to suddenly start getting a solid 8 hours at a time every day.

#3.)  I had a rather humorous exchange with the doctor about my arthritis.  I was limping rather seriously while I was there – a combination of extreme cold and impending foul weather made my left hip and knee irritated.  He saw it, and asked if I wanted him to prescribe a cane.  I laughed – and told him that I have 5 canes at home that I can’t use anymore. When he asked why, I had to remind him that I have arthritis AND bursitis in my left shoulder now.  When the hip and knee are acting up, so is my shoulder.  He laughed at himself briefly and admitted that I was right.

At that point, he inflamed another concern – by asking me if I was ready to start thinking about hip replacement surgery.  I’ve been holding my breath, metaphorically, expecting this conversation to begin sometime.  I have thought it through pretty thoroughly, I think.  I told him that the door is certainly open on that discussion, but I’m not ready to face it just yet.  Then I reminded him that the REASON I have arthritis in my hip is that I had a bone tumor near that hip in the femur, and if we did a hip replacement we’d have to replace the whole femur with it.  He thought about it a few seconds and agreed.  I’m not ready to face a surgery that huge just yet.  I’m not sure I ever will be, but I know I don’t want it right now.

#4.)  My blood pressure continues to confound establishment medical professionals.  The basic rule of thumb, that I was told in 1981 when I was a US Army Medic learning to perform annual physicals, is that the top number should be the patient’s age plus 100 (or less).  That rule of thumb would make anything below 154 on my BP acceptable.  What confounds the doctors is that I’m 53 years old, and my BP is a raw 120/82 without any medication.