Monday, April 14, 2014

Life changes -- RA drives me onto the professional off-ramp

Last week I officially acknowledged what I can no longer do -- my current job. It was announced in my org that I was stepping down from my position as an IT manager. I'll vacate as soon as they hire a successor.

I did this job for ~15 years. But I am no longer the person I once was because of pretty aggressive rheumatoid arthritis (RA), and I've been telling my boss for a couple of years now that a person is needed in this position that can handle the long hours that come with the job. So the succession plan is being rolled out ASAP.

Actually, my rheumatologist and endocrinologist have said for the last 4 years to "get out of that job," because the stress that comes with the ever-demanding and changing world of IT is wholly incompatible with an autoimmune condition that is profoundly affected by stress, the weather, and random foolishness I never can quite figure out. I'm deteriorating faster than I could have imagined. I guess the docs were right. I was in denial.

But those who know me know that I thrived for a long time on stress and long hours (or so I thought I did).

It's part of my own acceptance process to admit that I am not the person that I once was, chugging away on ungodly over-work up to about 3 years ago (doing this job plus running a full-time, nationally recognized blog, traveling during my vacation time to go to press conferences, the White House, covering all sorts of things as a citizen journalist in digital media). It was tiring, wonderful fun.

Fast forward to now -- rheumatoid arthritis has so destroyed me from the inside out that I:

1) can no longer down a 40 hour job;
2) had to shut down my blog;
3) can no longer travel alone because I can't lift my bags and I suffer from extreme fatigue and threats of flare ups from the barometric pressure changes because of flying;
4) live by the clock for meds, sleep breaks and the like; and
5) give up my weekends, taking my RA biologic med, and methotrexate that make me sick as a dog, and doles out unreal fatigue, all sacrificed so I can work the next week.

My spine is also now affected and one of my disks not only re-herniated (L5-S1), but it is collapsing on the other side, affecting feeling in my left leg and foot.

All in just three years. 

My life now revolves around preserving myself for work -- and nothing else of me is left for life. I am one of only a couple of patients of my rheumatologist that is still able to work. It's estimated that as many as one-third of people with RA are forced to stop working within 10 years of being diagnosed. You can read about others' experiences with RA and the workplace here.

Unlike some RA patients on the professional off-ramp, the organization is crafting an accommodation that may allow me to slide over to a different, hopefully more manageable 30 hr/week job. What's definite is that I will no longer be a senior manager. Does this bother me? Actually, I'm in such a constant state of pain and exhaustion that losing that status isn't something I'm mourning. It remains to seen how much of a demotion this new position represents.

In terms of reactions to the change, it's pretty clear that thinking about disability and my need to step down scares many people into silence (after all, it's natural to think "glad it's not me/that could be me" -- it's a very human reaction). Are you supposed to congratulate the person, have a sense of sorrow that they are stepping down for obvious health reasons? There is no good way to react. It was kind of like the interesting reactions I encountered during the couple of days I lost my voice due to a med change ("People -- I can't speak, but that doesn't mean I can't hear or think..."):
"[T]his temporary situation shows just how ill-prepared the average person is to deal with a disability of this nature. Our ability to speak allows us to convey a lot of information in very few words. Body language (thumbs up, down, OK gesture), is pretty limited when you need to communicate detailed thoughts or nuances.
Those who can communicate vocally assert their privilege/ability to try to force the mute to communicate on their level even when logically they know the other person cannot speak. You can see the frustration on their faces; they'd rather avoid me rather than try to compensate for the communication delay. Well, of course -- a pad and pen is a poor substitute.  I've also had to whisper from time to time because of my frustration in moving conversations along so I can get back to work. They don't want me to break my vocal rest, mind you, they just don't know what to do, so they avoid."
What I cannot avoid

Emotionally, I'm not really able to celebrate anything, since some things are still up in the air. But honestly, I'm still having those feelings of "Dead woman walking" or that I represent "the old dog taken out back and shot in the head." Pick your poison of negativity. It's all normal feelings I've had over the last week, and I just have to work through it. I do take solace in that I know that I'm not alone; this is a story that has played out (with even worse circumstances and resolutions) for most patients with severe RA. It's the netherworld prior to full disability -- too sick to work full time, not sick enough to qualify for disability. It's a high bar to clear. Besides, in my case I, want to work. And just be able to exit with dignity when the time comes. That option usually doesn't happen for most. Many simply have to resign.

It's horrible to know that I have a professional expiration date that isn't long in the future. Even something as simple as writing longhand is excruciating. I have to wrap my hands (and now my thumbs too) each AM, to tolerate typing all day. If I lose that ability, I don't know how I'll adjust. I detested using Dragon Naturally Speaking when I tested it. I think so much faster through my hands; when the day comes and I cannot type, it will be a real crossroads.

Part of me wants to flee and leave it all for someone else to deal with rather than exist being less than whole and involuntarily on a professional off-ramp at 50.

But I live in the real world. I just have to stay healthy enough to make it through the fire of a long list of to-dos to pass the torch to the next IT manager.

And figure out how I'll be able to make it to the next Journey concert when they hit Raleigh (on a weeknight, no less. I'm usually in bed by 7PM these days). I'll really pay dearly in terms of fatigue, but I need something to feel positive about right about now. I'm still holding out on buying tix because of the health circumstances, so I guess I won't get good-for-photos seats now. Sigh. Ah, just think Anything is Possible.

Thursday, April 10, 2014

My eyes, my eyes! Travails of progressive bifocals, the eye doc...and cataracts?!

Saw eye doc yesterday. Terribly necessary because I cannot see anything in focus in any field of my progressive bifocals at this point; things are fuzzy, and for close up (like reading a pill bottle), I just take my glasses off or lift them up. It's incredibly annoying.

Good news/bad news. Good news first - no damage from taking Plaquenil (rheumatoid arthritis drug), or any sign of diabetic retinopathy. She was shocked since I've had insulin-dependent diabetes for ~30 years at this point -- I keep my BGs in line, that's why! [Eyes fine; legs/feet and neuropathy not so much.]

My prescription at this point has changed (no shock there), but the other element at work is that because of RA and some of my meds, my eyes are extremely dry, so much so that the doc said I need to come back next week. I have to use eye drops every 4 hours and eye ointment at night. Then I'll come back retest and see if the script matches my tests yesterday. Some info:

Dry eyes is a common problem for patients living with rheumatoid arthritis. Patients may notice irritation, a gritty feeling, painful burning, sensitivity to light, and a sensation that something is in the eye. It is caused by a lack of tear production. Patients with dry eyes are at increased risk for infections around the eye and damage to the cornea. 
Eye dryness is also a symptom of Sjögren's syndrome which is an inflammatory disease that can affect many different parts of the body, but most often affects the tear and saliva glands. Approximately 10 to 25 percent of rheumatoid arthritis patients will develop Sjögren's syndrome. Treatment for dry eyes include artificial tears or prescription eye drops (ie. Restasis).
We'll see how things go in a week. On the matter of the actual glasses, I don't know if I just need to pick my battles and trash the whole progressive bifocals thing.

Oh yeah, the bad news -- she was shocked to see that I'm developing cataracts in BOTH eyes. She was like -- "wait, you're too young for cataracts at this stage!" (I'm 50) Last year there was no sign of this, but yet again, inflammation from very active RA can play a role. So I have to stay out of the sun, keep blood glucose numbers (BG) in line and stay away from prednisone (a steroid many RA patients rely on for some relief; I don't use it because it screws up my BGs). Thankfully I don't smoke, another factor in developing cataracts.

It also explains why night driving has become more difficult, and why bright light has been hurting my eyes more than in the past.

Friday, March 28, 2014

A nod to the late PHB - a Vicki Award from Woodhull Sexual Freedom Alliance

What a wonderful surprise! Nine years of online activism and one award that I never expected to receive is a sexual freedom award. Does the content my former labor of love, Pam's House Blend's rate that honor?

The good people at the Woodhull Sexual Freedom Alliance (Facebook, Twitter) thought so, and contacted me recently to announce that I will receive its Vicki Award (and I'll deliver a keynote address) at the Sexual Freedom Summit  (@WoodhullSFA) on August 14-17, 2014, in Alexandria, VA. Hashtag: #SFS14.

About the award:
Established in 2010, the Vicki is named after Victoria Woodhull, the namesake of the Woodhull Sexual Freedom Alliance. Ms. Woodhull was an American suffragist born on September 23, 1838, who was described by Gilded Age newspapers as a leader of the American women's suffrage movement in the 19th century. She became a colorful and notorious symbol for women's rights, free love, and spiritualism as she fought against corruption and for labor reforms. A strong advocate for collaboration and for full equality rather than "just" individual rights, Woodhull was generations ahead of her time.
I am in terrific company. From the press release:

The 2014 Honorees

Carol Queen is an American author, editor, sociologist and sexologist with a doctorate in sexology who is very active in the sex-positive feminism movement.  The founding director of the Center for Sex & Culture in San Francisco, Queen serves as Staff Sexologist at Good Vibrations, where she’s worked since 1990.  Read more here.  

Cory Silverberg has developed and facilitated workshops for hundreds of agencies and organizations serving both youth and adults across North America on a range of topics including sexuality and disability, sexual pleasure, sexual communication, sex toys, and sex and technology. Cory has also delivered keynotes, lectures, and interactive public talks for professional conferences and student groups. Read more here.

Pam Spaulding considers herself an accidental activist.  The founder, editor and publisher of Pam’s House Blend, a startling honest and astute blog focused on the LGBT community, Pam has guest posted/contributed to Americablog, Pandagon, Firedoglake, The Rude Pundit, The Bilerico Project, Glenn Greenwald’s Unclaimed Territory on Salon, and written for The Independent Weekly.   Read more here.

The event will be a rare occasion for me these days - traveling, due to impact on my RA. Woodhull and its Executive Director Ricci Joy Levy have been very accommodating re: my need for rest and recovery. It's sad I have to live by the clock for meds and such these days. But I'll go down fighting.

Tuesday, March 18, 2014

Losing the RA battle and it's only Tuesday!

Made it through the usual fire of biologic med side effects that kill my weekends (Fri PM to Sun afternoon) so I can continue to work, but between the impact of a terrible weather front and an insane workload, I came home in searing joint pain everywhere today.

Bed time? 6:15 PM. That's a new record for me.

Anyway, the reason I'm up now is to take some more Aleve to tide me over till I have to get back up at 3:30 AM for the next cocktail of meds so that I'm functional at work tomorrow. Otherwise I'd rather be unconscious to recharge my limited body battery supply before I have to get back on the hamster wheel again.

Even the popular biologic RA drugs (like Enbrel, Humira, or Orencia) can't perform those miracles that Big Pharma portrays in those commercials you see on TV. They seem to air with greater frequency these days. These ads really downplay the serious side effects - the narrators speed through a partial laundry list while showing the sunny, compelling visuals of people opening jars, digging in gardens, tossing a ball with kids, etc.

I guess visuals showing patients writhing with chills, experiencing crippling fatigue, and communing with the potty for 2 days a week after dosing their meds probably wouldn't go over well with focus groups...

The drugs don't stop progressive joint damage for everyone either, or stop the chronic pain entirely. They temporarily relieve some inflammation and, to their credit, for me have reduced sick days to nearly zero, a huge relief. Hell, I worked (though I probably should have been out, but duty called) even while suffering from shingles agony for a couple of weeks. Before biologics, I was probably down and out on average a day a week; that was at first diagnosis in 2011.

BUT, my effective high-functioning ("gee, you don’t look sick") hours per day are continuing to shrink, in the slow, steady decline folks with RA (and similiar autoimmune disorders) are all too familiar with. I look in the mirror and can now easily see the toll of the battle of trying to hold on to "normal" as it fritters away.

Sunday, March 2, 2014

Another lost weekend...

This weekend has been quite pitiful. Between the shingles (in parts where you'd never want them), my weekly RA biologics making me feverish, sick & sore,  and the side effects from the 3x a day anti-virals for those shingles, I spent most of the weekend in searing pain, nodding out, or unconscious.

Thus no FB activity. I didn't have the attention span or energy to even pick up a tablet. Now that's bad for me.

Today's major "activities" -- since I'm sick of being sick from my declining autoimmune state and I'm stubborn -- involved limping, slow, short trips -- one to the grocery store, and briefly to Costco. That was so exhausting that as Kate drove the 15 min home, I nodded out, then needed a 4 hour nap. Saturday I was even more useless, if that can be believed.

I don't know if I'll be in any shape to work tomorrow since the anti-virals knock me out and I have to take one dose midday. (4 more days to go).

Thursday, February 27, 2014

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?

Wednesday, February 19, 2014

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.

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." 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.


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?