Monday, December 19, 2011

You Are Here ... Where Am I?

I finally decided to check in.  Since one of my goals is to encourage others who are setting out on their RA journey, I avoided sharing for a while.  Why?  Because I was in a very bad place.

One of the most frightening things I witnessed early in my internet quest for information about chronic illness was how many people came to support sites feeling hopeless and defeated.  I was terrified that I would fall victim to those feelings permeating my life.  I have since learned those feelings can be an element of the process without becoming a permanent condition.  But, while I try to honestly share my feelings in this blog, hopelessness and defeat have no place here.  I have had a brief period of that, and I chose not to share it - it isn't good for me and it isn't good for any innocent reader who might stumble upon this blog and get the impression that this represents life with chronic illness.

One of the things I like most about myself is that I am a "fixer".  I welcome challenges and problems because I love the feeling of accomplishment that comes from achieving a solution.  It may be as simple a thing as finding a workaround for hands that won't grip; in this case it was realizing I needed help, and asking for it.

I come from good stoic Scot-Irish stock.  We are long-suffering, we are hardy, we soldier on.  This time I had to ask for help, something that is completely foreign to my nature.  I learned some incredibly helpful facts by asking for help:

I have a great GP doc - he's always been there for me, but when I turned to him because I was weepy and melancholy, sleepless and unable to concentrate, he did something really marvelous.  He congratulated me on asking for help ( clearly, he knows me well.)  He immediately gave me a medical term for what I was feeling (I found that sooo reassuring!), and encouraged me by saying "I'm suprised you've made it this long without needing some help."

You can ignore stress, depression and anxiety - but not for long when you have chronic illness.  Sometimes they can be so serious that a person feels hopeless, even suicidal.  For me, it was as if I was successfully juggling all the balls that life had thrown at me .... then, the most ridiculous little stinking thing was that final ball that caused the whole operation to collapse.  If I forgot something at the store, I would totally overreact and find myself with tears streaming down my face.  Even I get that I wasn't crying over the forgotten item - I was crying for the loss of my wellness, my joy, my mojo.  Suppressed stress and worry were simply finding another route to get. out. of. my. head.

It is stronger to ask for help.  This was a toughie for me.  I have always been from the "get a grip on yourself" school of psychology, not terribly compassionate with myself or others about depression and anxiety.  I now consider myself pretty damned fortunate to have made it through much of my adulthood with that attitude.  And I think I'm a better person for my recent experience - more compassionate for knowing that none of us in immune, and smarter for learning not to hide it and suffer silently.

You must care for your whole self.  With prescription drugs or therapy (or both) when you need it, you can make a real difference in your overall health.  Even though I'm still without RA meds, still taking wicked antibiotics for TB, and still living on pain meds - I feel better physically.  My fatigue is improved, my pain is better managed, I'm sleeping well most nights.

So the doctor says he'd like me to keep taking this anti-depressant/anxiety med for about six months.  We've talked it over, and we both feel that will get me past a couple of big hurdles and into smoother waters. 

This is by far the hardest post I have written to date.  Blame my hard-headedness; blame the social stigma - I'm really not sure why the act of writing this was so daunting.  But maybe it can help one person with RA or Lupus or some other chronic illness see the path that I found so hard to follow - reaching out and asking for help - it's there, and it's definitely the right one.

Tuesday, November 1, 2011

How Do You Spell d.i.s.a.b.i.l.i.t.y?

If you are like me, the word disabled has always meant physically unable to participate.  If a person can't walk, then she is disabled from walking.  If another person can't see, then he is disabled from seeing.  Like so many things I never imagined would happen to me, it seemed so simple...

Suddenly, my little black-and-white definition doesn't work.  I am struggling with my application for Social Security Disability Insurance - this is early benefits for someone who is, other than age, eligible to receive Social Security.  (As opposed to SSI, which is benefits for a person who has not contributed enough at this point to qualify for Social Security.)

Here's my dilemma:  There are very few things I simply always cannot do; however, virtually everything related to working is something that I sometimes can't do, and can't predict when or where that will happen.  For instance, today I can write a check or take notes; tomorrow I may wake to find I can't hold a pen properly, much less write my name ... and I can't predict whether that inability will last a day or a week. 

Sometimes I can't get out of bed at a certain time; sometimes I can't shower and dry myself off; hell, sometimes I can't wipe myself.  Today I can type for 20 minutes before my hands stiffen; tomorrow, I may only be able to type 5 minutes.  Sometimes I can sit for 20 minutes before pain forces me to stand up & move around; other times I'm good for an hour.  Sometimes I am so fatigued that I literally can't sit up at all.

I'm sure it comes as no surprise to you that there is no room for gray in disability report forms.  Either you can or you can't; either you have a "disability" or you don't.  And from what I've read, you had better be able to perform on command if you are going to a disability examination.

Here are some questions I'd love to see on a disability report form:

Would you prefer to work rather than apply for Social Security Disability?   "YES!"

How long have you been contributing to Social Security?   "45 years"

Are you happy to be answering all these personal, dehumanizing questions?   "uh, no"

Is it grueling and painful for you to fill out pages & pages of forms?  "Yup"

Do you enjoy having a healthy bureaucrat act like you are a deadbeat by asking pointed questions in a disbelieving manner?   "do I really need to answer that?"

If there was a job out there where you could come in late if you had a terrible morning; take a nap as needed; take pain meds that muddle your cognitive powers; wear slippers because shoes won't fit; leave 3 times a week for doctors' appointments; not do your work if you're having a bad day; leave early if you have a medication reaction ... would you take it?   "Sure. Would you hire me?"

So apparently what I am supposed to do until RA causes enough damage that I am visibly "disabled", is to lie to an employer and claim I can show up on time, work the hours assigned, and do my job well.  Not sometimes - all the time, which I believe is still the standard expectation in the real world. 

And if I refuse to lie to an employer and I don't fit into the SSA's little perfect definition of "disabled" . . . then what?  Not suprisingly, I haven't found anyone who can answer that question.

So, here's what I'd like to do:  I'll just take all the money that Social Security has gotten from my paychecks for the past 45 years.  Oh, and I'll take those Medicare taxes, too.  No, no you don't have to pay me interest on my money that you've held for 45 years because you were sure I couldn't manage it properly.  That's right, I'll just take the principal, and you can deduct any funds I've received over those 45 years for Rent Assistance, Medicaid, WIC, Food Stamps and other government handouts -that would be ZERO.  Yes, you heard me - I. JUST. WANT. MY. MONEY.  And you can keep your applications and waiting rooms and smug clerks and sluggish, depressing, belittling, demeaning disability process.   And I'll suppress the urge to tell you where to put them.

Wish me luck ... I'm going in.

Tuesday, October 18, 2011

Sometimes the Clearest View is from the Valley

We all have them - peaks and valleys.  The natural ebb and flow of life's geological journey.  I have definitely been in a valley (Grand Canyon?) for the last 2 1/2 months.  (For new readers,  Methotrexate was damaging my liver, the standard TB skin test to begin biologics was positive, and while I wait for the state health department to process protocols for my doctors, I am between meds.) 

Interestingly enough, being completely off RA meds long enough for my body to recover its natural state has resulted in a bit of clarity I haven't experienced since before my diagnosis. 

I'm still taking daily pain medication, but it is the mildest of narcotics, so I don't suffer fuzziness or lethargy from that med, like I did with Methotrexate.  As each day passes, I can literally feel a slight difference as MTX exits my system - yes, every day brings a bit more pain, spasms, stiffness - but also a clear-headedness and focus I had lost has returned, and surprisingly I have more energy.  Having tapered off Prednisone in early summer, I am no longer anxious, ravenous, and grouchy like I was the entire 9 months of Pred therapy.  As the fog of side effects clears, I have come to realize what a hot mess I was on these combined drug therapies and while they helped with symptoms, they by no means led to remission.

At this point dear reader, you might expect me to suggest that others might also benefit from a medication vacation.  I hate to disappoint, but that's not the theme of this post at all.  We all know that trying to manage RA with pain meds and the occasional steroid burst will do nothing to stop the march of destruction - we need DMARDs and biologics to slow the damage.

What I have come to realize through this forced halt in therapy is this:  I have been a poor steward of my own body.  When I was finally diagnosed, after years of symptoms and the all-too-common disconnected treatment of individual episodes, I was only too eager to take the meds I was prescribed.  I am ashamed to say that I was so miserable by the time I got that first prescription, I never researched the side effects of long-term prednisone therapy - until I started feeling them.  I jumped at the chance to start Methotrexate in hopes of getting off Prednisone.  I never really practiced the caution I should have when taking a drug that is known to cause liver damage (I test positive for autoimmune liver disease, so it should have been a priority to recognize the signs before my 60-day labs told my rheum I was in trouble.)  It is our responsibility to be informed and aware about our drug therapies, even when we desperately need relief.

Things happen for a reason, and I guess I needed this mini-crisis to bring clarity for me.  Although I hope that every one of you can reach this state of clarity, I certainly don't recommend the path I'm on.  Trust me, you do not want liver issues, to be reliant on pain meds to accomplish activities of daily living (read wiping your tush), or to have the state health department interject itself into your treatment plan.  But I hope each of you can take away this moral from my story:  RA treatment is a science experiment ... literally.  Be informed before you put a new drug in your body; be conscious of your body's signals; don't just accept side effects if other therapies are available; don't assume that everything you feel is an RA symptom.

Because so few of us achieve remission, we struggle for balance in our treatment and balance in our lives.  And the only person who can define a proper balance is you.  I have accepted my disease, I understand my options, and I am now better prepared to define my personal balance.  I hope each of you can find that for yourselves.

How do you balance your treatment options and overall wellness?

Friday, October 7, 2011


Missing in Action ... that pretty well describes the past month for me.  We've had a serious family illness/surgery, I've been swamped with doctor's appts, and I have floundered so much mentally and physically with my RA that I didn't feel I could make a meaningful post - I am in a difficult transition period between treatments, and really don't know what to think, so why record *that* for posterity.  :p

Today marks one year since my "official" diagnosis with Rheumatoid Arthritis.  I think I'll mark this day by noting some interesting things I have learned in the past year:

*There are people out there who understand.  One of the best things that happened for me this year was finding the RA community on the internet.  Having that outlet and information resource has literally saved my sanity in a world where the public (mis)conception of RA is that we get aches and pains in our joints, pop a pill, then go out and buy a new pair of red high heels.  I have learned so much more from my fellow RA patients than from my doctors, and so much more from my doctors by asking the right questions because some who have traveled this road before me shared their experiences.

*I can do anything (I vaguely remember believing this when I was in my twenties, before cynicism reared its ugly head.)   There is something to be said for being forced to reinvent yourself.  Many of my favorite activities are out; chronic pain and fatigue severely restrict my social life; doctor's appointments, procedures and medication side effects keep me from traveling unless it is planned with military precision.    The mental exercise of prioritizing and adapting has been good for me, and I now know that there is nothing I can't do if I want it badly enough - kind of a psychic cleaning of closets.

*You must be your own advocate.  RA treatment is ever evolving; doctors can be behind in the latest research & treatments; factions in the medical community can disagree.  Experiencing my first year of full-blown RA has made me fully realize that this is my body, my disease course, my treatment choices, and it's okay to question, to research for myself, and to go against the grain if it's in my personal best interests.

 *RA is not a death sentence (unless I let it kill my hope, strangle my independence, bludgeon my zest for life - then I might as well be dead.)  It's natural to be depressed sometimes and I know there will always be good days, bad days and occasionally very bad days.  But each day is an opportunity to choose how I will live that day and I value the good ones even more than before.  I will make good use of the good and I will get through the bad.  I will not let fear of the future prevent me from wringing everything I can out of a good present.

*The reason wisdom comes with age is because mortality puts things in perspective.  For the first time in my life, I can actually see my reduced life expectancy and potential disability from where I stand.  Take my word - that puts things into crystal clear perspective for you very quickly.  No time to waste, I now know what's truly important.

*Next year will be better.  See all the above. 

Here's wishing all my fellow travelers Love, Hope & Joy.  Don't sweat the petty stuff (and don't pet the sweaty stuff).

Wednesday, September 14, 2011

9/11, Heroes and Me

I have been thinking a lot the past few days about the heroes of 9/11.  I am awed by the hearts of those who ran into the WTC and those who stormed the cockpit of Flight 93.  I can only hope that I would show such grace and courage if given the opportunity to save a life.  I admire the heroes who choose service to others as their life's work - fire fighters, first responders, police officers, military men and women - and I admit that I don't have it in me to serve in one of those careers.

But I am learning to give myself a little more credit for a different kind of courage.  The quiet kind of courage that those of us with chronic pain and incurable illnesses show in somewhat smaller ways every day, simply by doing what has to be done, continuing to live life, getting on with it.

Don't sell yourself short: it takes courage to choose medical treatments that make you sick in hopes that disability will be stalled and others won't have to care for you; it takes a unique kind of bravery to give yourself injections, swallow those pills, go for infusions when you know the side effects will soon follow.  It requires a brave heart to pretend that you aren't frightened by the statistics - that the average rheumatoid arthritis patient's life is shortened by 10 years- or by the facts - that any simple infection could be life-threatening, or that in spite of all your best efforts, you could be living life from a wheelchair.

Some days, it takes the heart of a lion to rise from your bed, take your pain meds, and fight to have a "normal" day.  It would be so much easier to succumb to the depression, the pain, the fatigue.  But what kind of life would that be?  It takes heart and strength and bravery to live a life painted with fear and pain and loss.

So, let's give ourselves a little credit - we may not be heroes ... but then again, maybe we are.

Thursday, September 8, 2011

Just Checking In

This week I haven't blogged because I was so very busy feeling sorry for myself (see prior blog posts).  All better now.  Self-pity has its place, but quickly becomes boring for me.  And the imminent 10th anniversary of 9/11 helps to put my little problems into perspective.

Hopefully I'll soon hear about starting my antibiotic therapy for preventive TB treatment (see prior blog posts).  I'm ready to get that over with, but it has to be run through the state health department, and as we all know the wheels of bureaucracy grind slowly...

So, I have a big day tomorrow.  Rheum appointment so she can assess how I'm doing off meds,  then an MRI of my hands and wrists because they are looking & feeling a bit wacky to my doc. 
I may even have lunch out if I still feel like it after lying in a ginormous banging magnetic tube for 1 1/2 hours.

Ah, the retired life ... who needs hobbies when you have rheumatoid arthritis?  

Hope you're all well.  I'd love to hear your favorite MRI story! 

Thursday, September 1, 2011

Another Star in the AI Hemisphere

Venus Williams, a world-class professional tennis star, made headlines when she announced yesterday that she was pulling out of the US Open in the second round.  She started an absolute media frenzy when she published a statement today that she had to bow out of the tournament because of Sjogren's Syndrome, an autoimmune disease that shares some symptoms with RA and is often a secondary diagnosis for patients of its more debilitating cousins like Lupus, Psoriatic Arthritis, and Rheumatoid Arthritis.

I don't want to play "who has the more serious AI disease" - I imagine a diagnosis of SS, especially for a professional athlete, is equally crushing as a diagnosis of RA.  Both are incurable, both can be extremely damaging, and both can be extremely difficult to manage.

I hope for Venus treatment is quick and effective.  I hope her SS is not a portent of other, more dreaded AI diagnoses on the horizon, as it is for so many.

I also hope, quite selfishly, that the buzz in the media brings a little desperately-needed attention to the plight of those with AI diseases, which are often "invisible" for years until their dirty work becomes apparent to the casual observer.

I hope that valid, factual information about AI diseases will find its way into the national consciousness.  We can hope that before the media loses focus, opportunities for dialogue will arise and advocates for the AI community will have a moment to speak.

There have been many public figures who have chosen not to share their private pain, and I respect their choices.  There have been some who have chosen to share their carefully spun stories to sell books or new pharma products, and I don't particularly respect their choices.

The autoimmune community needs our Michael J. Fox, someone who can capitalize on his fame to shine a light, educate, and advocate for research into the origins and a cure.
I hope that Venus Williams, this beautiful, talented, articulate woman, feels compelled to be our advocate.  I guess you could say I'm wishing on a star.

Ever Feel Like a Big-headed Boy?

My regular readers may remember that I have slogged through a month of indecision and frustration, finally reached a decision, only to be trumped by recent lab results (showing liver damage) that demanded I do what I had just grudgingly decided - start a new treatment for my rheumatoid arthritis, in spite of scary(er) side effects.

Here is the latest installment of the soap opera that is my life with RA ...
Part of the preparation for beginning treatment with biologic drugs is to have a TB skin test.  The drugs slam your immune system so effectively that if you have a smoldering infection, it can blossom into a life-threatening situation.  Many healthy people who are exposed to Tuberculosis carry a little capsule of TB that their immune system has effectively imprisoned, rendering it harmless.  So, in the better-safe-than-sorry approach, TB tests are performed to rule out the danger of creating an active TB infection by compromising your immune system.

You have already jumped ahead, haven't you?  Yep - you guessed it.  My TB skin test is positive.  That doesn't mean I actually have TB, it just means I have been exposed sometime in the last 6 decades.  In the past week I have learned (a bit late, eh?) that travel to Mexico, volunteering with at-risk populations (HIV, homeless) and simply living in a state that borders Mexico are all risk factors for exposure.  And that active tuberculosis cases are on the rise in the US.  Good luck trying not to obsess about this the next time someone coughs on you at the grocery store.

So, all RA treatment is on hold.  As the methotrexate wears off, I'm living on pain pills for the increased pain, carefully limiting my activity to avoid triggering a major flare, sleeping a lot as my fatigue increases.  I have my trusty prednisone taper for backup if things spiral out of control.  I'll begin 6 months of antibiotic treatment next week, and at about 6 weeks my rheum will begin to monitor labs to determine when I can start my biologic treatments.

So today I was reading the side effects of the antibiotic meds I'll be taking.  The number one side effect is liver damage.  Wait, that sounds... isn't this what... what the hell?

Ah I see, it's a big cosmic joke.  On me.  But, where is the punchline?  Now I know how Charlie Brown felt about Lucy and that damned football.

Sunday, August 21, 2011

Once a Flower Child ...

... always a flower child, I guess.  On my birthday this year as I enter my sixth decade, I'm ruminating on love and its many definitions.  In The Four Loves, C S Lewis wrote that there are four types of love (affection, friendship, eros & charity).  As much as I admire his writings, I suspect there are many more than four if we really think about it.

My very favorite type of love is charity, which I believe can be expressed as forgiveness, compassion, generosity, empathy, sympathy ... and I bet you can think of others I forgot.  Charity-love is for me the hardest to practice consistently, and the most lacking in our world today.  Mother Teresa is my model for perfect charity-love.  While I know I'll never approach her saintliness, I read from her book No Greater Love and try to grow through her wisdom almost every day.  I still have a very long way to go.  :)

The Sixties was about free love, anti-war love, loving change, but with the Sixties came a concept that I fear we have overdone a bit, and that's self-love.  As parents and teachers, it seems to me we have placed too much focus on self-love for a couple of generations, and the societal results are clear: materialism; hate-mongering for those who aren't just like us; hero worship for athletes & celebrities who haven't earned our respect but reflect how we want to envision ourselves; churches where we demand entertainment instead of soul-searching and reflection.  Maybe I'm just getting old, but it looks to me like this whole self-love thing isn't working out well for mankind as a species, and particularly for American society.

So, my annual reflection on where I stand and what I plan for the coming year leads me to this resulting resolution - I am going to concentrate on sending my love-energy outward and see how that goes.  I will try not to miss an opportunity to display through my actions that I believe every living creature is deserving of my love.  I will try to have more empathy for people who aren't just like me, people who make mistakes, people who may be harder for me to love than myself.

I guess you can take the sixties away from the flower child, but you can't keep the flower child out of her sixties.  Peace, man! 

Friday, August 19, 2011

Hold On - We're Making a Quick 180!!

Well.  What a difference a day makes.  My rheumotologist called me Wednesday - yes, the doctor herself!  After pleasantries were exchanged, she got right to business. 

"Are you drinking alcohol?  No."  Have you started taking any medications I haven't prescribed, even OTC stuff?  No." 

"Well then, I want you to stop your methotrexate therapy immediately, no more injections.  Uh, okay...why?"

I'll spare you further transcription of our conversation (you're welcome).  My liver enzymes are through the roof on the every-two-months bloodwork I had done on Monday.  MTX has started to cause liver damage, which is a pretty common side effect.  After a 3 week cleansing period, I will visit the rheum's office for a loading dose of Cimzia, her strong recommendation for my first biologic.  She has urged me to go with Cimzia, because it's much faster acting than the other drugs in its class, and we'll know in 90 days if it's going to work, rather than the grueling 6-9 month trials other drugs require to assess effectiveness.

Ironically, all my angst over starting a biologic drug, and my triumphant decision to give it the go ahead, lovingly committed to the ether here on my blog, is essentially moot - a complete waste of the energy and importance I gave it.  Maybe this will seem humorous at some point in the future ... the faaaarrrr future.

Right now, it just seems like another of ra's dirty little tricks, another insult to body & mind & the fragile illusion of control that I continue to cling to.

Being an unrepentant control freak, I don't handle these twists & turns so well.  It reminds me of an experience as a passenger in a 1969 Camaro hotrod a few years back.  As the ranger of a state park that contained the steepest, curviest 3.4 mile mountain road in New England, I hosted a number of races on that road - foot races, luge (where the fools ride skateboards 60 mph down the twisty road lined with huge boulders - but that's a story for another day), bicycle races, and of course car races.  I was offered a ride in the Camaro during a practice run for the semiannual car races.  Sounded cool.  Might have been if I were driving, but the guy who was driving decided he would do his best to make me pee my pants.  For months after, the only vehicles I rode in on that mountain road had me at the wheel - did I mention I like control?

Guess I need to just buckle up, because apparently ra is in the driver's seat on this ride.  Control is just an illusion.

Wednesday, August 17, 2011

How to be a Real Man

My friend Ray died this morning, in his house with his family by his side.  It stinks that he died, it stinks that his last year was all chemo and radiation and doctors and hospitals.  And most of all, it stinks that there aren't that many men like him these days, and we'll miss the pleasure of his company.

Ray found out he had metatastic cancer last August.  He and his wife Shirley were on their long-planned trip to Alaska when suddenly, he couldn't breath.  He was flown home, underwent tests, and got the very bad news - multiple organs, lungs, brain.  It is phenomonal that he did so well for so long, but Ray decided he had things and people to take care of.

He continued in his volunteer position with our Property Owner's Association - sometimes he was out of pocket due to hospitalizations and treatment - but there was a neighborhood that needed taking care of. 

Ray also made sure his family was taken care of so they would have no day-to-day worries when he was gone.  He took care of the paperwork to give his son his truck.  He sent the kids out with Shirley to get her a new car so she would have a warranty and no service problems.  He even made his own funeral arrangements, so his loved ones wouldn't have that burden in the days after his death.

Ray arranged for hospice care when he got the latest bad report.  He came home and prepared to die.  He discouraged us from visiting him these last couple of weeks, and I'm convinced he was once again taking care of his friends so they wouldn't remember him with sadness. 

I definitely won't remember him with sadness - admiration, respect, fondness.  How can you be sad about a man who knew exactly how to live, and - when it was his time - knew exactly how to die?

Forget the sports stars, the movie stars, the politicians and musicians - my friend Ray was a role model for how to be a Real Man.

I'm sure gonna miss him.

Tuesday, August 9, 2011

Cover the Mirrors, Don your Black Threads....

My family is in mourning, but no one knows. We are fortunate that we haven't lost a loved one. What they mourn is life as we knew it just a short year ago.

Sometime in the last few months, dawn has broken and my family has realized that I may not ever be who I once was. At the risk of sounding brash, I was the spark plug of our family life; the one who had ideas, planned & executed gatherings, cooked too much food, urged the grandkids to try new things, and cared for those who needed help. I was Type A and proud of it - my mantra was "let's make it happen!" My family is seeing what I have known for a long time - this rheumatoid arthritis is not just an illness that you treat and it goes away.

Since my diagnosis with ra (I am now refusing to grant it capitalization in my blog - take that!), I rarely have the energy to make more happen than personal hygiene and basic household chores. In fact, as I type this I'm sitting in my pajamas at 1:20 in the afternoon because I'm not quite up to showering & dressing "for the day".

I have left my job, stopped my volunteer activities, and essentially become the last person they can count on, because I never know what pain, stiffness and fatigue each day will bring. I often have to cancel plans at the last minute with family and friends. It's just the nature of the disease, and frankly, I have become very selfish of my energies because I've found I fear the payoff if I overdo. Two of my grandsons came for their week at Nana's in June and determined to make some fun for them, I was too active - I spent the next 10 days in the worst disease flare I have had since starting treatment. I can actually see the damage that those 10 days caused when I look at my hands. I simply can't risk that happening again until I find a medication that is suppressing my disease activity better.

So, I have a plan (Type A all the way). After resisting, studying, soul-searching, vacillating ... I have decided to take my doctor's advice and start one of the new biologic drugs for ra (didn't forget, you won't get a big letter out of me!) I hate the idea of putting that crap into my body for many reasons, but mostly because it's so new and no one knows what the long-term effects can be. I have decided to choose hope of improvement over fear of what may be.

And I've decided to choose a chance at returning to the person I used to be over the safety of being the person I've become. Because I want my family to mourn me after I'm gone, not now.

Wednesday, August 3, 2011

Chronic Pain is Not a Symptom

I can remember a few years ago when I thought I understood chronic pain. Simply put, chronic pain is any pain that lasts more than six months. But when it happened to me, I responded in typical manner by researching chronic pain to better understand.

It was then I realized how shallow my understanding really was.

For many years, I medicated for nagging pain with over-the-counter NSAIDs. But since my RA decided to get really serious about attacking joints & organs, I have experienced constant, daily and unrelieved pain that just isn't touched by nonprescription pain medications.

I am one of the lucky ones. My rheumatologist asks about my pain, listens, and makes pain management an important element of my disease treatment plan. Through my participation in RA support groups, I have learned that her approach is somewhat uncommon. It is shocking to me that many, many RA patients report their rheums refuse to prescribe pain medications. Some even refuse to refer their patients to pain management clinics, or question the patient's description of pain, saying things like, "You have no joint damage, so you couldn't be in the pain you're describing." It's impossible for me to imagine how I would respond if a trusted doctor said that to me, but I suspect it wouldn't be pretty.

Effects of chronic pain are well-documented:

Sleep disturbances and resulting fatigue;
neurochemical changes that cause ever-increasing sensitivity to pain;
increased tension, anxiety and fear of injury;
weakened immune response;
depression and/or anger;
and more.

Consider that all of the items on that list are effects of Rheumatoid Arthritis (or its treatments) even without chronic pain. Add chronic pain, and it's no leap in logic to assume that one should attack both elements of the disease with equal vigor to achieve best results and a semblance of normalcy for your patient.

I believe that chronic pain is an integral part of my disease, not a symptom. And that treating that pain is as important to my overall health and ability to battle the disease as any of the other treatments I undergo.

I am very lucky that my rheumatologist knows the secret to compassionate treatment of RA and its sister Chronic Pain. I'd say that I wish she could share this secret with other docs who treat RA patients ... but that would be wrong.

Her secret is that she has RA.

Friday, July 29, 2011

RA Treatment and Morton's Fork

Morton's Fork is a term used to describe a choice with equally unpleasant results. The term is named for John Morton, a tax collector in the reign of Henry VII who used the following logic to collect taxes:

If a person chose to live well, he must have plenty of money to pay taxes to the King. If a person chose to live very frugally (or had to), he must have plenty of savings to pay taxes to the King. So, people began to say they were skewered on the prongs of "Morton's Fork".

The term is rarely used nowadays except to describe a Bridge playing maneuver.

I am currently taking weekly self-injections of Methotrexate (MTX), a chemotherapy drug that's been around for decades, and is the go-to drug of choice in attacking active RA for most rheumatologists. MTX has earned a spot as first-line treatment, because in low doses it is relatively safe and relatively effective in slowing or stopping disease progress; stopping disease progress means damage to joints, tissues & organs is halted - that's the golden ring we're all reaching for, and what my doctor defines as true remission.

MTX can cause some well-documented common side-effects like hair loss, mouth sores, nausea, stomach cramps & higher risk of infections. It is also associated with some less common but much scarier problems like liver damage, lung damage, neuropathies and increased risk of lymphoma. The best news where these risks are concerned is that there is a long history of MTX use in the real world, so its easy for me & my doctor to watch for indications of any of the wicked side effects.

MTX is the first prong of my Morton's Fork - I have accepted the risks & unpleasant side effects in hopes of achieving remission.

Unfortunately not only have I not seen remission in 8 months of MTX therapy, but I haven't seen sufficient reduction of disease activity to hold off joint damage. So, Dr. A has advised me that she wants me to try a biologic drug in addition to the MTX in hopes of beating my crazed immune system into submission.

Biologics are (simply put because I am after all somewhat simple) not the chemical combinations that are so many of our medicines invented in earlier decades. They are created through recombinant dna processes and may replicate or mimic the actions of our own proteins, antibodies, and other elements of our body's complex functions. For instance, one of the classes of biologic drugs for RA is designed to "flip a switch" in some cells that inhibits the production of a protein shown to initiate immune response, thereby reducing the damaging inflammation of rheumatic diseases.

Biologic therapies are pretty new, pretty impressive, and pretty promising. But - and this is a great big but - they bring another set of potentially life-threatening side effects, and the added risk that there are long-term health risks that we just haven't seen yet because they are so new.

Biologics are the second prong of my Morton's Fork.

To complicate things even further, I don't get to trade one risky drug therapy for a second risky drug therapy - I ADD it. Biologics are proven more effective when used together with MTX, which suppresses unwanted immune response to the biologic actions.

So in summary here are my choices:

Stay with current treatment, current side effects, current unacceptable results;
Add a biologic drug that will increase side effects, I don't know exactly what it will do to my body in the long term, in hopes of better results;
Toss the whole treatment thing, treat for pain, and wait for the inevitable deformity & crippling.

Geez man, I just wish I could pay my taxes and call it a day.

Friday, July 8, 2011

Rheumatoid Arthritis is Not for Sissies

One of my favorite quotes of all time is from Katherine Hepburn. When asked in an interview about health problems at age 81, when she suffered mobility issues and an ever more maddening palsy, she said, "Old age ain't for sissies." I always liked that statement, but I think
I now truly get it.

Kate Hepburn and others who are lucky enough to grow old live everyday with limitations, aches & pains, worries that the rest of us don't really understand. It's hard work.

In the two years since my Rheumatoid Arthritis went into fulltime active disease, I think I
have begun to really understand what it means to live with RA in a way I simply couldn't, even though my mother had mild RA. For those who wonder what it's like to have RA, let me try to explain in a way I guarantee you haven't read in an article or seen in a drug commercial:

Have you ever had an earache? Or a toothache? One of those pains that actually elicits a moan or a groan?

Try to imagine for a moment, that toothache. Imagine that it's in several different places in your body all at once. And you are exhausted, because toothaches cause fatigue.

Now, imagine that it simply never goes away.

Imagine that you go to the doctor, and he tells you there is nothing wrong to cause that pain. So you go to another doctor - a specialist - because it's not possible that there is no reason for that pain.

Imagine that the specialist tells you there is nothing wrong.

Time passes, you work up your courage to see another doctor, then another. Finally, someone decides you should see a rheumatologist (or like me, you research your symptoms on the internet and ask for a referral to a rheumatologist.)

The rheumatologist sends you for labwork, x-rays, examines you and names the reason for your pain and fatigue - finally! You are given prescriptions and told to take multiple pills or injections, or infusions. Some of these drugs have terrifying warning labels, some are used for cancer treatment, some are so new that long-term effects aren't known. The drugs make you vomit, they make your hair fall out, they give you headaches, acne, joint pain, chills, or other side effects. But you take them because you want to get well, and because sometimes they make your toothache feel a bit better.

Imagine that the toothache doesn't go away for long, if at all. Imagine that the drugs get stronger and stronger. And finally...

... imagine that you will do this for the rest of your life, because there is no cure for your toothache.

That toothache is Rheumatoid Arthritis. And let me tell you buddy, Rheumatoid Arthritis is not for sissies.

Thursday, July 7, 2011

Say a Prayer for Mack

Tomorrow is a big day - we go see Dr. Brady our awesome vet to find out if Mack's cancer has returned. Mack is our 7 year old rescue , a wild, crazy, funny, sweet boxer-boy, my fierce protector and willing co-conspirator for the last 6 years. Mack had a spinal stroke in May 2009 and learned to walk again after many, many weeks of therapy. He walks a bit like Chester from gunsmoke, but he can still run like a deer - one of the wonders of neuro damage. In April 2010, a bump we'd been watching for 2 years almost doubled in size overnight - the vet confirmed my worst fears. Mid-surgery, they found that the tumor had crept several inches in all directions. It was a gory and painful recovery, and Mack never really got his wild-boy mojo back, but he still knows how to have fun and we had a great 1 1/2 years ... until I found another growth just recently.

Our appointment is in the dreaded end-of-workday time that's reserved for euthanasias. It wasn't easy, but we've agreed (hubby & I) that we won't ask Mack to suffer another invasive surgery so we can try once again to postpone the inevitable for a few weeks or months. I have had pets literally my entire life, so it's remarkable that I've never been in this position before. It's got me thinking alot about dogs and people and the value of the relationships I share with both species.

For me, relationships with people are complicated. I've always been pretty independent and self-contained - I don't mind being alone, in fact I crave it at times. I'm not easy with new people, and it takes a while for me to be comfortable after meeting someone. I tend to cultivate a few very good friends, and many of what I call friendly acquaintances, but certainly haven't christened as trusted friends. In fact, I've been surprised a few times along the way when a person I don't feel I could call a good friend says that I'm her best friend, or confides something extremely personal, or asks me for a favor (or a loan) that I would never impose on someone other than my very best friend. I often feel a bit like I was raised by wolves or came from another planet when I'm in social settings with people (mostly women) who all act like the best of friends but compete and cut each other in sweet voices with smiles on their faces. I defy any woman to say she hasn't had such an experience, and I've never figured it out.

I said all that to say all this: the more I know about people, the more I like dogs.

Dogs don't care how much money you have, what kind of car you drive (windows are good!), or how much that tennis ball you threw cost.

Once a dog trusts you, he will share his bed, his food, his favorite toy - it pleases him to make
you happy because you are his friend.

Dogs don't withhold love when they are mad. They will bite you if you deserve it, and then they want to make up.

Dogs don't lie. They don't cheat. And they don't steal unless it's something really good and you should have shared anyway.

Dogs live in the moment - they don't worry about tomorrow, they don't hold grudges because of the past, they just want to enjoy this moment, and they want you to enjoy it with them.

I have been fortunate enough to keep company with dogs all my life. I can't honestly say that about all my people. I guess that's why they call dogs "man's best friend".

I read somewhere that of all the domesticated animals, dogs are the only species that chose to live with men. I am so very grateful that they did. And I'm so very grateful that fate brought us to Mack - he is my soul-dog.

If you can spare a minute, say a little prayer for Mack. And go hug your dog.

Wednesday, July 6, 2011

What's Funny About RA

If you can't find the humor in life, you are doomed. This is especially true if you live with chronic pain. Admittedly, I have days when absolutely nothing is funny, or even the least bit entertaining. Most RA patients have disease "flares", times when disease activity is high and pain, stiffness & fatigue are debilitating. These flares can last hours, days, weeks - there are even a few with RA who never get a respite from the aggressive march of their disease and the crippling damage it inflicts.

Interestingly, many of the people I know with RA who suffer the most have the best senses of humor (is that right - the plural looks weird). Begs the question: does suffering teach us to chill, not take ourselves so seriously, actually "build character"?

How can I not laugh when I realize that painting my toenails is like a Sumo wrestler attempting yoga? Why not laugh off the fact that it's 3:30 pm and I'm still in my pajamas when UPS comes to the door? You hear humorous names for that every-morning ritual when you can't motor around well because of stiffness (morning stiffness is a hallmark of RA) - the Frankenstein walk, the penguin walk, the Zombie walk, etc. Many in the RA community believe that the name of the disease should be changed, because it gets confused with osteoarthritis, a serious but milder condition. One of my favorite suggestions is Type II Rabies - definitely an attention getter! (thanks Jay)

Some may think it's strange to make light of such a serious, crippling disease.

When you are faced with the prospect of the Zombie walk every morning for the rest of your life; when your husband or your grandkids have to paint your toenails; when you flood the bathroom because you're alone and your hands suddenly won't work to turn off the bathwater - the only sane choice is to laugh.

Tuesday, July 5, 2011

RA Loves a Crowd - Online Communities

I frequent a Facebook fan page with 9000 members - what we all have in common is living with Rheumatoid Arthritis. It has been a phenomenal source of information, support, and a safe place to address my fears, questions and feelings about dealing with an incurable chronic disease. I have made friends there ... real, reliable, warm friendships with people I've never met. This is a wonder to me, and a source of great comfort in the wild & wooly world of living with chronic illness.

Today, a new member of the community made some comments that were pretty blunt & somewhat misguided. The responses can be divided into two general categories - 1) I disagree, but I can see where you're coming from; 2) how dare you come here and question how we do things.

I was uncomfortable with her comments. I was uncomfortable with many of the responses. I tried to decide what caused my discomfort, and it was this:

We forgot there for a minute why we were there. The original poster and some of the responders forgot for a minute that there are 9000 people in this group, with 9000 stories and experiences (or lack of experience in this case.) The community has a huge cast of characters from all over the world, a few being:

The OneUps - I've had RA longer (my RA is worse, my labs are more extreme, I have more joints affected, I take more meds.) Sometimes this information is relevant to a post; sometimes it isn't. These are a few folks who don't let irrelevance keep them from sharing their statistics.

The Role Models - I have mild RA (I'm in remission, I have better function, I'm a vegetarian or runner, swimmer, take this supplement, have a positive attitude) and if you would only be just like me, you'd have milder RA too.

The Snake Oil Salesmen - I have a book, website, method, diet, to sell you & cure your RA.

The Homesteaders - I have been a member of this community longer,

The Jokers - I make light of RA to try to cheer the group up. It's possible this could annoy some people who are having a bad RA day (week, month..)

The Sybils - I may be any or all of the above, all in the same day (I think I probably fit in here.)

What's great about this community is that, even when we're having a little pissing contest about who is in charge, we almost never forget one essential fact - RA doesn't care who you are, how advanced your disease is, how you feel today, whether you live a perfect lifestyle, or how long you've been diagnosed. RA can strike you down in a heartbeat; you can go to bed feeling well and literally be unable to get out of bed the next morning. You can be enjoying positive results from your medication cocktail today, and next week it stops working and you have to start all over. You can be suffering your very first disease flare or your 100th. RA can cause joint destruction within the first two years of the disease or you can have it for 50 years with no deformities. You can teach university-level macrobiology, be retired, an IT professional or a stay-at-home mom. RA doesn't care.

In my experience, when the time comes that you need information, support and encouragement, just like RA, the characters in the community don't care who you are or what your story is. I sure hope we don't let personalities make us forget that.

Casey Anthony, the media, American culture

I just watched a half-hour of televised coverage of the Casey Anthony verdict (for those of you who have been vacationing on Saturn, she's the young mother who was accused of murdering her 3 year old daughter in Florida.) Oh my, where do I begin?

The verdict was Not Guilty of murder/Homicide/Manslaughter, but Guilty of giving false info to a police officer, 3 counts. It seems the immediate response to that on social media & television is that this is a miscarriage of justice, and Casey Anthony should have been convicted.

I can't know what was in the jury's minds, but I can tell you I have had doubts about Casey's guilt all along. I feel she had guilty knowledge, I feel she knows who the murderer is, but honestly with the cast of family characters and the accusations of abuse in that family, it's hard to come to any conclusion about Casey except that she's complicit in the coverup, clearly screwed up and a horrible mother. And those flaws do not a murder conviction make. But for argument's sake, let's assume she is guilty.

What is most troubling to me is, if we believe the popular theory that Casey killed that toddler because being a mother was cramping her style, how did she get to be so bereft of even the most basic morals? In my mind there are only two possibilities: she was born a psychopath, or she was raised one. In either case - where were her parents, how much have they hidden or lied for her in the past, do they know the truth and are protecting their daughter even after she commited a heinous murder? I don't know the answers to these questions, but I have questions of my own...

If you knew that your child had commited a murder let alone that of your only grandchild, would you help her cover it up? Would you remain silent and let her be found Not Guilty? Would you (presumably) support her, pay legal bills, come to court to show support? Or would you go to the police, tell them everything you know, let the legal chips fall where they may, and seek forgiveness and the compassion to try to help her rehabilitate herself (and her soul)?

In our current culture, each new generation of American parents has become more focused on self-esteem, competitiveness, permissiveness, material things, and situational morality (the concept that rules are good for everyone else, but when it's our problem, we have a good reason).

Is Casey Anthony just an extreme example of the self-involvement we are teaching our kids?

Saturday, July 2, 2011


Sorry guys, but this is an unabashed open love letter to the girls - you know who you are.

Nobody but girlfriends asks how you are and really wants to know.

Women can follow you from zero to sixty in 4.5 seconds; pull a Starsky & Hutch one-eighty with you; crying one minute, laughing the next.

Women don't care whether you shaved your legs.

Girlfriends love your pets as if they were their own.

Women understand and sympathize when you're afraid. And they are the ones
who bravely go where we have to go and do what needs to be done - hospitals, nursing homes, funeral homes - you know what I'm talking about.

Women are the ones who will be there when all the men in your life are gone, whether you're young, middle-aged, or old.

I'm so glad I'm a woman, and I'm so glad I have girlfriends.

We are shit hot! :)

Health Care - the Good, the Bad, and the Ugly

I retired from an executive job with a state agency that managed benefits for employees of the 2nd largest state in the US. I have some pretty impressive experience in communication, education, policy-making and even drafting of legislative language for health, pension and investment programs. So, I like
to think I know a thing or two about navigating health care systems, dealing with doctors ... you know, being a patient. After piecing together the crazy quilt of my symptoms, treatment and misdiagnoses over about 7 years, I connected the dots of my own diagnosis and gently asked for tests and a referral that led to my eventual diagnosis of RA, and finally - treatment.

I don't blame anyone for my being somewhat difficult to diagnose; RA is just one of those diseases that doesn't come to mind when you see some of the widely varying symptoms. It doesn't present the same in everyone. Some patients have outrageously obvious lab results; others are what is called "sero-negative", meaning they don't carry the typical blood markers for inflammation that constitute the smoking gun for a diagnosis of RA. Some patients have extreme swelling; some rarely swell. The list goes on.

But there are a few defining elements to RA that are virtually universal, symptoms that every RA patient brings to the table like stiffness, pain, fatigue, malaise ( a fancy word for feeling like crap - I describe it as that feeling you have with the flu, like "just kill me now"). Fatigue is an indicator in many illnesses, as is malaise. A doctor can easily overlook RA when considering these. And heck, I'll even give them stiffness, because until you know they want you to call it that, it's easy to describe it differently. That leaves pain, and pain is considered subjective. Here's where we get into trouble.

There is wild variance in how doctors view subjective evidence such as pain or symptoms that may have been apparent 3 days ago but aren't now (like swelling).

Some doctors consider what the patient says, and include those observations in their decision making. Others refuse to consider "anecdotal" evidence - meaning statements their patients make about their symptoms.


My First Blog Post

This is certainly not the retirement I had planned.

Well, here I am - blogging. Imagine that. Honestly, I never thought I had much to say in this format. To be frank, I've always regarded blogging as an activity for struggling writers or the painfully egotistic, and I didn't think I fit into either of those categories. Hmmm, guess I'll rethink that. *seconds pass* Yup, I must be a struggling writer after all.

Come to think of it, this past year has been an exercise in rethinking a lot about myself. For my entire life I defined myself as strong, controlled, capable, healthy, reliable (yes, I see these are all positive attributes - I didn't list humble).

But when your laser-like focus is reduced to counting the minutes until you can legally pop another pain pill or measuring how long you can avoid vomiting from poisonous medications; when your steel trap of a mind is muddled by the logistics of carefully rationing your steps around the grocery store so you won't have to use the dreaded electric cart; when you cancel social events, leave early or don't make plans at all because a 30 minute car ride leaves you feeling like you ran the whole distance .. without shoes .. on broken glass - well, you tend to stop thinking of yourself in sterling terms like reliable, strong, capable. You feel broken, weak, good for nothing. And in your newfound humility, you let go of some of your arrogant ideas about things like, well, blogging.

I can imagine you asking yourself at this point, "What the hell happened to her?"

I have Rheumatoid Arthritis - a chronic, incurable autoimmune disease. The hallmarks of RA are bone-crushing fatigue, unrelenting pain and loss of motion in joints, muscles and tendons, with eventual joint destruction, deformities and a probable early death. Confusing isn't it, because the name makes it sound like the arthritis we all know old people get when their joints wear out (osteoarthritis).

But it's not what you think. It is your immune system gone wild, attacking and eventually destroying - yes, joints - but also tissues and organs like your skin, your heart, your circulatory system. Children and young adults can have it, though it is more commonly diagnosed in the 40s and 50s. Women are three times more likely than men to have RA, but men usually suffer with more aggressive disease. I am absolutely stunned that I made it into my 50th decade without knowing these things about RA. And my mother had it. About 1% of the world's population has it - that's over 68 million as of mid-2010. If hearing these facts makes you curious, check out the links on this page for more info about RA.

So, if you've stuck with me this far, here's the payoff. Why, you may ask, am I blogging?

I'm blogging so that if I'm lucky someday, somewhere, someone who has read this blog will meet a person with RA, and will not say (as I have before), "Oh arthritis - yes, my grandma has that in her fingers."

I'm blogging so maybe someday a person who is frantically searching for information about his newly diagnosed RA will find this blog in the ether and be reassured, like I was, that there are others who can offer advice and support.

I'm blogging because I have read ridiculous, obsolete information about RA on the internet, and I was saved by finding the blog of Kelly Young (, an RA patient who gave me a safe place to ask questions and learn about my disease.

I'm blogging because it's sad, so sad, that I can't make a targeted contribution to fund research toward a cure for a disease that afflicts 68 million people (more than Autism affects worldwide).

And I'm blogging because I want to shout out loud to anyone newly diagnosed that I've made it through the painful, terrifying, grueling first year of treatment for RA and I still have hope, I still have fun, I still have my sense of humor ... and I still have plans!

Peace out.