Shingles...and not on the roof

G-d dammit. I need another health hurdle like a hole in the head, but here we are. I've had an outbreak of shingles.

Shingles is a painful skin rash. It is caused by the varicella zoster virus. Shingles usually appears in a band, a strip, or a small area on one side of the face or body. It is also called herpes zoster.
Shingles is most common in older adults and people who have weak immune systems because of stress, injury, certain medicines, or other reasons. Most people who get shingles will get better and will not get it again.

Um. Wrong. I had an outbreak back in the 80s along a nerve near my eye, which is a pretty dangerous area to get it. I was in a lot of pain for a  few weeks, with the weeping sores, burning, aw damn. I was under a lot of job stress at the time and that triggered the shingles. I was a lot healthier then, so I tolerated it better and recovered pretty well.

Shingles occurs when the virus that causes chickenpox starts up again in your body. After you get better from chickenpox, the virus "sleeps" (is dormant) in your nerve roots. In some people, it stays dormant forever. In others, the virus "wakes up" when disease, stress, or aging weakens the immune system. Some medicines may trigger the virus to wake up and cause a shingles rash. It is not clear why this happens. But after the virus becomes active again, it can only cause shingles, not chickenpox. 

You can't catch shingles from someone else who has shingles. But there is a small chance that a person with a shingles rash can spread the virus to another person who hasn't had chickenpox and who hasn't gotten the chickenpox vaccine.Shingles symptoms happen in stages. At first you may have a headache or be sensitive to light. You may also feel like you have the flu but not have a fever. 

Later, you may feel itching, tingling, or pain in a certain area. That's where a band, strip, or small area of rash may occur a few days later. The rash turns into clusters of blisters. The blisters fill with fluid and then crust over. It takes 2 to 4 weeks for the blisters to heal, and they may leave scars.

Yeah, all of that. Where did it occur this time?

UPDATE on ExpressScripts/Accredo's power grab into your doctor/patient relationship, emergency care, advance directive...and more

[UPDATE 2/21: I received information that non-Medicare patients can refrain from signing or returning the form but may receive a modified version of the form at a later date.]

This bit of business should scare anyone using prescription insurance, as well as doctors and health care providers. Express Scripts (@ExpressScripts/@ExpressRxHelp )/Accredo (formerly Medco) recently sent out to its customers a packet of documents, a "contract" as it were, for patients to in essence sign a lot of their privacy and medical rights away to this corporate behemoth.

It is a controversial document because of its intrusion into the doctor/patient relationship, its request for a patient's advance directive, and request to authorize the company to "seek emergency treatment as is deemed necessary" for the patient, even though it is not the patient's medical health provider.

It's sad that you probably need an attorney to parse through the carefully crafted legalese designed to give ExpressScripts/Accredo control over your health care via information that it does not need to fulfill a prescription order, to maximize its ability to recover costs that may put your credit at risk, and to minimize its liability if services it performs have adverse results.

Accredo Patient Consent, Acknowlegment and Service Agreement form by Pam Spaulding

Valéria M. Souza (@VSouza_STL) has been working in her spare time as a patient advocate via Twitter, gathering a community of customers of ExpressScripts/Accredo who share a common bond of receiving poor customer services -- missed deliveries, short on dispensed number of meds, runarounds with online reps, denial of legitimate prescriptions -- you name it. She received this "contract" as well and immediately saw the serious problem areas that also caught my attention.

She noted:

Accredo is a wholly-owned subsidiary of Express Scripts (stock market code ESRX), the largest prescription benefits manager (PBM) in the United States. They both administer the plan benefits for people’s prescriptions (i.e. – decide if people can have access to certain meds) and fill those scripts through their own network of pharmacies.

It’s a monopoly in many senses of the word, and the company knows it. Many people simply cannot get their meds anywhere else. They have no choice but to fill with ESRX.

People who get meds from Accredo require specialty meds—expensive, often injectable or infusable drugs used to manage complex conditions like MS, cancer, rheumatoid arthritis, diabetes, etc.—which means we cannot just walk into any pharmacy and fill them. But even if we could, what ESRX has done to people in the past (according to anecdotal reports from patients) is simply refuse to pay for the med unless filled with ESRX’s own mail-order service.

That means that ESRX can do things like pressure people to sign a document giving ESRX the right to “seek emergency treatment as is deemed necessary” and mandate that you provide them with copies of your living Will … and if you refuse to sign this “contract,” they can potentially refuse to (re)fill your medications.

With that in mind, look at section 1, "Consent for Treatment":

"The undersigned patient or legal guardian or parent (of a minor) of the patient hereby consents to receive prescribed therapy from pharmacists, nurses and other health care providers employed by or agents of companies owned by Accredo Health Group, Inc. (collectively Accredo).

I furthermore consent and do hereby authorize Accredo to seek emergency treatment as necessary. This consent is intended as a waiver and release of all liability of Accredo for such products and services, excepting acts of negligence.

If patient's medication will be sent to and administered at a doctor's office, I authorize the patient's doctor to accept and sign on patient's behalf for delivery of such medication from Accredo."

Um...so a customer of Accredo, who has an ongoing relationship in-person with their physician, can have their therapy usurped by unknown health care employees of Accredo at its discretion for whatever reason Accredo deems. Are you OK with that?

And seeking emergency care on your behalf? I can only imagine the legal and medical mess this will cause while your life is on the line, with Accredo working to protect its assets if a product it provides causes harm. I'm no attorney, but the statement of "excepting acts of negligence" is a mere posterior-covering phrase, since we all know that the bar to prove negligence is so high and the cost to litigate so massive for the average person, that Accredo will almost certainly come out on top each time.

And what about Section 8, "Advance Directive Acknowledgment"?

"If patient receives nursing care from Accredo, I further acknowledge that I have been given an explanation of the rights under my state law to accept or refuse medical treatment and my right to formulate advance directives regarding such. I understand I am not required to have an advance directive in order to receive care from Accredo. I understand that I may request, and will be presented with, written material regarding formulating an advance directiive if so desired. I agree to provide Accredo with a copy of the advance directive that I have executed. I will inform Accredo of changes to any such advance directive."

Below that paragraph is a series of check boxes indicating whether you have a living will, advance directive, medical power of attorney, a proxy, and if you need information about advance directives.

Wow.

1. Did you sign up to have Accredo provide direct health care services?!
2. Why is it any of Accredo's business whether you have any of these documents? It is in the business of fulfilling prescriptions provided by YOUR health care professionals.

In sections 3 and 4 the "contract" discusses "Assignment of Benefits" and "Financial Responsibility". The language in #3 is pretty standard in that it seeks to assume the right to "claim, collect, and receive payment from any payor" providing coverage for its products and services. That would be your health insurance provider, such as Blue Cross/Blue Shield. However, my antennae were raised by the language in section 4 regarding assignment of charges to the patient if there is a problem with Accredo receiving payment. Many of these specialty meds for ongoing treatment of chronic conditions or life threatening illnesses, such as cancer, cost thousands and these expenses can potentially bankrupt a family if not covered. My bolding below:

"I understand that I am financially responsible for all products and services rendered by Accredo. I understand that if patient has no third party payor coverage for a product or services or the payor fails to pay, the undersigned accepts full financial responsibility for the incurred charges. I also understand that Accredo is available to help answer my questions regarding my payor benefits and my account status."

An example of why this clause is not clear -- I recently had a run-in with a threat from this 800-pound gorilla when, somehow, their records showed that I was simultaneously prescribed Enbrel and Orencia, two biologics that are never taken together, and both are expensive. I was, under my rheumatologist's care, trying each out, one at a time, to see which therapy was best handling my rheumatoid arthritis (RA). I received a threatening snail mail from Accredo telling me I owed the entire cost of the prescription. My doctor had canceled the Enbrel and ordered the Orencia digitally, in my presence, from the doctor's office. It was an administrative screw up somewhere along the line, but the responsibility to resolve it fell at my doorstep. I had to call my doctor's office and have them scramble to contact the Accredo rep so the dogs would be called off, and that I could receive the Orencia delivery in time.

Under this new clause, it's conceivable that along with this letter, you could receive an invoice from Accredo to pay up. You then have to sit with this aging invoice out there, potentially damaging your credit rating while you resolve where the administrative problem has gone wrong. Yet another reason to have an attorney confirm whether you, the patient, are going to be on the hook for more than you bargained for.

• Think about how many people received this document who may have signed it and returned it without really reading it.
• Think about how many people may not have adequate medical or legal literacy to understand what ExpressScripts/Accredo is asking them for.
• Think of the doctors and health care professionals of the patient who will have to deal with the hand of ExpressScripts/Accredo interfering with health care decisions for their patients.
• What do organizations like the American Medical Association think about ExpressScripts/Accredo's "contract" with its customers?

The ramifications could be far-reaching -- is anyone in the mainstream media looking at this in-progress power grab?

UPDATE: 3:00 PM: ExpressScripts responded with this Tweet:



I'm not sure what "we're on it" means, other than re-tooling the legalese to make it even harder for the consumer to understand the screwing they will get if they sign this contract. I eagerly await a response of substance. I'm sure thousands of these contracts have already mailed and some already returned. What will become of those?

The fun of increasing joint damage and unsettling fatigue - "but you don't look sick"

One of the things about rheumatoid arthritis, particularly with the advances of biologic medications that slow the damage of the incurable, progressive disease, is that it's mostly an invisible illness at the beginning. People cannot see the oppressive fatigue or the joint pain if your meds are working. In the last several months, pain mostly because of my re-herniated L5-S1 disc that's exacerbated by bad neuropathy in my feet/ankles, I have a pronounced limp, so people notice there's something wrong with me, but otherwise I can cover during the week. Monday through Thursday are my "good days when Orencia, the biologic I'm currently on, is most effective.

But to most people, the illusion of being visibly "OK" has been fairly easy to preserve.

During my visit to the rheumatologist yesterday, the usual physical examination (manipulating my joints), revealed that the joint damage in my wrists and hands is well under way. I already wrap my wrists with self-adhering ace bandages for support, and that helps, but the doc noticed my outer finger joints are starting to settle into unnatural positions, and some enlarging. No restricted motion yet, but it's progressing since my 2011 diagnosis. Mornings are really hard, even on good days; almost all my joints hurt and are stiff for 90 minutes or so. Sometimes different joints will feel like they are on fire, sometimes not. I try to ignore what I can.

But at today's visit I recounted the latest problems I'm having preserving that illusion of being OK.

1) That untimely sleepy feeling. In my high-stress job as an IT manager (talk about a job incompatible with a systemic immune system disorder highly affected by stress!), I'm currently at 75% and have been functioning well most of the time, but it's pretty clear that my ability to work at the level that I'm used to is diminishing pretty rapidly. As I said, meds keep me well-functioning about four days a week, but those four days have been taxing me beyond belief over the last 3-4 months. Around 2-3PM I have an unreal surge of fatigue that I used to feel only during the weekends after dosing. It doesn't seem to matter what I'm doing or how much sleep I've gotten -- it's almost a narcoleptic event. I found myself nodding out at my desk, hand on my mouse, and I could be in the middle of typing or pausing to think about my next thought. I'm like WTF? It's a mini-moment, but my brain feels like it is really shutting down, like I feel the need to lie down. I'm petrified to do so, because on weekends, it means passing out for 2 hours or more. And that's not going to happen while I need to be working. I manage to power through it somehow, but I'm left feeling spent.

I told the doctor that no amount of caffeine or walking around seems to help (I can't tolerate a lot of caffeine anyway); I just feel the need to lie down or else I will collapse. She's checking my B12 levels. I may need a shot to help boost my energy levels, if they are low.

2) Sundown/sunset effect. And this follows on the heels of above. I feel the key in my back winding down when I leave work. While I've come to accept that my energy depletes more quickly because of RA, what is the most difficult to accept is my functional hours during the week are so short. By the time I've given all of myself to my job, what's left is precious little. I have to go to bed at 7PM. Not because I feel tired, it's because I cannot stay awake. I am literally shutting down, usually as I sit on the sofa, my head falls to my chest and I'm nodding out... gone. Zeroed out. Sometimes Kate has to wake me and tell me to get up and take my night meds and to head to bed. I'm sunsetting.

How pathetic is that?

Usually I'm back up around 10-11 PM for an hour or two, and then again at 3:30 AM to take my "AM" meds that I need to take early enough to get a bit more sleep, but will enable me to function at work without being too dizzy or loopy or tired (until that 2PM wall, anyway).

That is the rinse-and-repeat cycle for Monday through Thursday. Fridays are the real wind-down day. By 2PM on that day, my meds are wearing off completely and everything begins hurting in addition to the wall of fatigue. That's the nod to re-up my injectible biologic and take my methotrexate (oral med) around 4PM. Both of these make me sick (as in friends with the porcelain god and ungodly fatigue and fever/chills) for the rest of that day and Sat/Sun. So my weekends are sh*t too. All so I can hold down the job.

My life revolves around providing every ounce of energy for my job because it has to. So everything else about life takes a back seat. Makes for a sh*tty quality of life.

My doctor has heard all of this before; the majority of her RA patients are no longer working after going through this dance of decline. But the good news is that more and more RA patients in general are able to extend their work lives because of these biologics. What the commercials for Enbrel or Orencia don't convey, for obvious reasons, is just how much down time you still have to have to recharge after activity sucks the life out of you, or how the weather affects you, or what those miracle med side effects do to you. But they are accurate in that they can slow the progression of RA in most, and sometimes result in remission for others. They won't prevent flare ups or take pain away 100% -- they increase your quality of life.

Of course that is all relative if holding down a job is considered the "quality" part of your life when you'd like to reclaim the rest of it. But this is part of living with RA. Compromises, complications, reality checks, realizations of who you were, and who you are in the moment.

My doc said that we could try a couple of other biologics; she mentioned two (Simponi, Xeljanz), and I had to inform her that my prescription insurance, ExpressScripts, will not cover them. (For more on that issue, see my post "When your prescription insurance company forces you on meds that don't work") So even when there are options to try to help improve matters, you're kind of limited by your health/prescription insurance. You have to be "happy" with what you're able to take and what those meds deliver, and be thankful you have decent coverage at all. This is why, even with the severe limitations of the Affordable Care Act, people who would otherwise be completely left out of the ability to work with an illness like RA, may have a chance to remain viable in the workplace.

The long (but safe) journey home in the 2014 Snowpocalypse in Durham

I just made it home, whew! I left at 1:15 and a 20 min drive took a dangerous hour. Thank goodness I have an Subaru Outback w/AWD. There were abandoned cars, school buses sliding, cars sliding down hills. I took side roads because 147 was a parking lot.

The snow was falling fast and piled up quickly. Now that I'm home, I see on the news that it's a disaster out there. I was fortunate. I left a bunch of cars on a steep hill in the dust. They were spinning out, had flashers on, it was awful. Worst driving in snow I've seen since moving back in 1989. We're expecting an ice storm later, so we can only hope that we don't lose power.

Some pix:

Outside the window at Brightleaf at 1PM:



Really slow moving traffic on University Dr. 147 freeway out of control already so I bypassed it a 20 minute drive has now taken me 45 minutes and I'm about halfway home.





I took side roads, and got on Cornwallis next to the projects, correctly thinking there wouldn't be much traffic there. Because of the Subaru I got up the huge hill next to the cemetery, where people were spinning out, sliding everywhere trying to get to Fayetteville Road. This pic is once I was on Fayetteville Road which is really slow but passable. I actually saw a school bus struggling down this road.



Another school bus; scary here near Barbee Road it's starting to really ice up.



HOME!!!! Thanks to the Subaru and experience knowing the back roads in Durham!



NOTE: I wasn't texting while driving. My phone's Android OS allows you to dictate rather than use the virtual keyboard. Quite handy (and accurate). And the pix were taken while I was stopped (which, as you might imagine, was quite often).