Saturday, February 4, 2012

When it Rains

I guess I'll never get used to being less in control.  But I'm learning to ride the rough seas a bit better.  Much less bailing that way. :)

My sister and I have been planning a spring trip since last summer.  The plan was to take 2-3 weeks, fire up the little motorhome and go west until we hit the Pacific ocean, just ride the back roads and enjoy the scenery.  I just found out that I have to have three surgeries: eyes, to correct Prednisone cataract issues; hands, for carpal tunnel release; cervical, for RA-related spinal cord compression.  *BIG SIGH*

I guess I could say when it rains it pours.  But for the first time in about three years, I have decided instead to say when it rains, look for puddles to play in!  Yes, it'll be a while before I can drive that motorhome west, but I am so grateful that I've finally learned to look for the positives once again.

My disease activity is the slowest it's been in the past three years, so recovery should be much easier.

I have excellent insurance, so even three surgeries won't cause financial doom.

The weather will be good this spring, the mildest it's been in several years, so I might be a bit housebound, but at least I can get outside.

I will feel so much better and be in much less pain when we take that postponed trip west.

I am so grateful that I have found peace with my life with RA.  It's such a pleasure to feel that I
have grown through this experience.  I've learned to live a daily life of gratitude for the gifts I have, gifts I had all along but didn't appreciate like I should have.

I know the disease will be back;  I know I will have bad days (weeks, months); but I finally know that
I've got this - I can do it.

Immeasurable thanks go to the RA community, and the people who take the time to share their wisdom, experience and empathy.  It never ceases to amaze me that some of my closest compadres in
this journey are people whose voices I've never heard, whose faces I've only seen in graphics.  I'm so glad I found you.

Now let's all go play in puddles and kick some RA ass. 

Tuesday, January 10, 2012

A Surprising Decision

I have always been a bit of a contrarian.  Those who know me realize it's a pretty ingrained character trait (or some would say a flaw).  Conformity and acceptance just don't come naturally to me.

But with my medical treatment for Rheumatoid Arthritis, I was uncharacteristically subdued and compliant that first year.  Virtually everything I read or heard urged me to aggressively treat with the latest, most effective drugs.  In theory, this should protect me from joint damage in 8, 10 or 15 years.  Then, when I was completely disabled by medication side effects,  I read this blog post by one of my RA heroes:

It was so refreshing to me to read that someone else felt their body rebelling against the medications, especially since I was spending about 3-4 days a week in bed with side effects from max dose Methotrexate, daily Prednisone and NSAIDs at the time.  Maybe that blog post planted the seed, or at least nudged the contrarian in me.

Before I thought it through to a decision, fate made the final choice.  After 10 years of self-medicating with NSAIDs before my diagnosis, NSAIDs of all types (even over-the counter doses) became an exercise in self-punishment; doubled over with stomach pain, unable to eat, I gave them up after dire warnings of permanent damage.  Sick to death of the Prednisone anxiety, insomnia and hypertension, my rheum and I mapped out a taper schedule to get me off the steroids.   Methotrexate alone was not cutting it; we discussed biologic medication options.  Just as I was finally thinking of adding Cimzia, my liver enzymes went off the charts on my bimonthly labs ... bye-bye Methotrexate.  In my panic at the thought of going backwards, I agreed to start Cimzia. Then a week later, my TB skin test (just a formality for biologics therapy, right?) was positive.  Now I had to undergo a 6 month period of antibiotic treatment to be eligible for biologics (I'm halfway through that now).

Two interesting things came out of this confluence of fateful events - I was forced to accept and learn to live with my increasing daily pain, and I found my inner contrarian again.

Losing the NSAIDs was not a huge deal while I was on daily Prednisone.  Tramadol works for me to reduce pain (it doesn't work well for some), so that helped.  Tapering off Prednisone was much tougher - after tons of aches, pains, increased stiffness and a doubling of my Tramadol dose, I made it.  I now use Prednisone in short tapered bursts to manage disease flares.

How do I live with my increased daily pain?   I have learned to understand my triggers and be respectful of those boundaries.  I don't try to push through a flare.  I don't overexert myself, even when I really want to.  I accepted the fact that I can't work, even part-time without spiraling into uncontrollable disease from the everyday stress and required consistency.  I accepted medication and therapy for my anxiety, stress and depression.  I have learned to ask for help, and to accept it when it's offered.

What part does my inner contrarian play?  She tells me to trust my gut.  She reminds me that, although the common wisdom is that toxic drugs delay joint destruction, science has yet to prove it.  She urges me to balance quality of life NOW, TODAY against future risks.

The bottom line?  I will finish my TB treatment.  And after that, I will resist biologic therapy as long as possible.  I will reassess my choices as needed.  But I will not spend 3-4 days a week in bed from medication side effects as a tradeoff for the uncertain promise of delayed joint destruction.  I will look at the big picture, and make my decisions accordingly.  And I will continue to blog about my experiences, hopeful that my story can help someone else feel less alone.

***Please don't read this as advice!  This is a chronicle of my personal journey and choices.  I consult my doctor when making these decisions and you should too.  My disease is moderate, and other factors such as my age at diagnosis, my overall health, my lifestyle may not apply to you and your uniquely personal situation.***

Wednesday, January 4, 2012

New Year News

There is such a feeling of promise in the first days of a new year.  In the infancy of each new year we make resolutions; put away our holiday decorations; plan for spring break...whatever your new year rituals are, you are probably practicing them now.

In retrospect, I find that last year I failed to achieve some of my biggest goals for 2011.  Circumstances beyond my control prevented me from getting the upper hand on my disease, and I let it defeat me - I let it keep me from truly enjoying the good days (sometimes weeks!).

So my only resolution for 2012 is to live more in the moment.  I resolve to put the bad times in perspective and only let them rule in the moment.  I'm feeling pretty optimistic that, in spite of how my medical situation proceeds this year, I can still make it a good one.

I'd like to thank each and every one of you who has encouraged me as I chronicle my journey.  There have been times when your comments and compassion have been the light that helped me find my way.  Tune in if you can ... I'll try to keep it interesting, and I love to hear how you're doing too.

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).