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.

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?

MIA

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).

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.

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! 

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.