Why Did I Come in Here and What Am I Doing?

stress

I’ve had to refocus my wandering attention lately by asking myself those two questions.  Almost anyone can relate to this difficulty caused by many, many distractions and demands on our time.  Those of us with chronic illness can relate on a different level.

With so many tasks left unfinished, my mind moves at a dangerously fast pace. And I can’t keep up with it.  In midstride I forget where I’m headed and what I wanted to accomplish. Faulty memory sometimes accompanies the aging process, but it bursts to the surface with a flare of my Rheumatoid Arthritis (RA). And I’m not that old. Really, I’m not.

The wanderings of my imagination take me to thoughts I don’t yet need to think.  The tyranny of the “what if”. What if I have a flare up of symptoms on a very demanding day at work? What if the next round of medical tests show that my RA is advancing? What if an additional medical problem is discovered?  It turns out that my intuition must also be in high gear because many of the things I’ve been worrying about have recently appeared.

Wondering if I will have enough energy and focus to move through the next series of events.  Enough wondering.  Time for action.  Recently, I tried some audio files that were titled as relaxation sounds and found them stressful.  It’s snowing and very cold outside.  The babbling brook and spring bird calls created a dissonance with my current environment.

In the past, yoga and meditation has been a successful way to bring back my focus and proactive attitude. Pardon me while I lay out my yoga mat.

yoga mat

 

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Lourdes, Lily Pads, and RA

lourdes

For hours at a time, I would sit across the river from the shrine in Lourdes, enjoying the shade trees and listening to the flow of the water.

You know those sudden moments of clarity when something pops back into your awareness and you realize you’ve drifted off course?

A counselor by profession, I’ve been trained in meditation, guided imagery, and relaxation techniques. And I’ve failed to apply those very techniques to my own struggle with Rheumatoid Arthritis (RA).

I’ve recently begun Orencia (Abatacept) infusions, still seeking relief from severe RA symptoms. Methotrexate and Humira failed me after a somewhat bumpy course of treatment.  Onward to another type of biologic, Orencia.

Because the Orencia acts on a different type of cell, in a different part of the inflammation process, I have become hopeful once again that my inflammation will be eased – along with my joint pain and stiffness.

lily pad

All my relaxation techniques seem to involve water in some way!

Back to the guided imagery  It involves much more than the mind. It engages the mind, body, emotions, and all the senses.  During my grad school years, there was a professor who would capture our attention with short, pithy sayings he called DERT (Dave’s Eternal Rules of Therapy).  One of his favorite DERTs  (yes, his name was Dave) was “Everything’s connected to everything else.”

Back then I practiced all kinds of visualization and relaxation techniques. Mostly just to manage everything I needed to do to get through graduate school.  But those techniques were helpful. I suddenly realized that those same techniques would be valuable right now.  And so, my moment of clarity.

Of course, not all of the pain and exhaustion experienced by those of use with chronic illness are directly related to the amount of stress in our lives.  But if everything is connected to everything else – and I think it is – then imagery will help to reduce stress, promote relaxation, and give us the energy we need to bear the pain and move on with what we need to do.

I’m attempting to recapture the feeling of peace and safety that I found while on a vacation to Lourdes, France.  It was my mental go-to place for my guided imagery ten years ago. Wondering if it’s still possible to feel that connection again. I hope so.

I’m interested in hearing how helpful relaxation techniques of any kind have been to others who suffer from chronic illness.

 

Peas in the Office

IMG_1116

My new favorite office companion.

When looking for a heat pack to relieve the pain in my hands and wrists, I found a solution for all my joints affected by Rheumatoid Arthritis. Which is, in fact, all my joints.

This is the perfect size, heats in the microwave in 30 seconds, and it’s fun to watch all those beads roll around inside.

It’s available at CVS for around $7.00 in the U.S. Consider this an unpaid endorsement for Peas Hot or Cold Therapy Pack.

We Are 50 Million with Bodies Gone Bonkers

50 million grey

March is Autoimmune Disease Awareness month. Do we need an entire month to be aware? You bet we do!

With autoimmune diseases affecting about 50 million of us, there’s a lot of information to share. Over 100 types have been identified, with the most frequent being Lupus, Crohn’s Disease, Ulcerative Colitis, Celiac Disease, Multiple Sclerosis, and Rheumatoid Arthritis.

As devastating as a diagnosis of cancer would be, consider receiving a diagnosis of something equally devastating, but no one that you talk with recognizes it as a life sentence. Your autoimmune disease may receive no media attention, but your life has been altered just the same.

Some people will view you as a hypochondriac. Others will be totally misinformed and offer you advice about how to cure you illness. To them I say that Celiac Disease is not a wheat allergy and Rheumatoid Arthritis is not just another form of osteoarthritis. Muscle weakness, joints on fire, extreme and chronic exhaustion, severe abdominal pain and inflammation, uncontrollable diarrhea. These are just a few symptoms of some type of autoimmune disease.

Many people with autoimmune disease don’t show the outward signs of what they are carrying with them every day.  Never, never assume to know anyone else’s burden.  “How are you feeling today?” is acceptable conversation if you detect that something is wrong.  Unless you carry your own autoimmune disease with you, “I know how you feel.  I had the flu last week and I couldn’t do a thing all week.” is not acceptable.  Sympathy is not required nor desired.  A little understanding is much appreciated. Ask questions without making judgements.

Each of the 100 plus autoimmune diseases will change lives. Forever. There is no cure. Only attempts to control symptoms and return to some quality of life. To explain it in military terms, an autoimmune disease is friendly fire. There is nothing friendly about being fired on by your own side of the battle. The body’s cells are being attack by your own immune system because something has gone berserk and those cells are viewed as the enemy. So the immune system attacks. And the results are devastating.

There is so much more to say about autoimmune diseases and I’m thankful to have an entire month to do just that.

Whatever. All those Arthritis Diseases Are the Same.

I’m still troubled by this comment.

When discussing individual accessibility issues with someone, she mentioned her osteoarthritis and how it affected her mobility. When I disclosed that I had Rheumatoid Arthritis, the conversation took an interesting turn.invisible illness

I thought she would be understanding, mainly because she has a severe chronic illness that accompanies her osteoarthritis.  But I was so wrong.  Her response was “Osteo, rhuematoid, all those arthritis diseases are the same!”  Ouch. I think I reacted physically as well as emotionally.  But I didn’t respond. I couldn’t decide what to say in response to what seemed like a dismissive comment.

How do we increase understanding of rheumatoid arthritis as an autoimmune disease – a systemic disease?  I want no sympathy, no special attention, or no shoulder-shrugging dismissal of symptoms.  This is not a my-disease-is-worse-than-your-disease competition.  Anyone with an invisible chronic illness has their own struggles, as does every human being on this planet. And for all we know, other planets, too.

Perhaps when someone dismisses your symptoms so quickly, you will have the presence of mind to educate. I missed my opportunity.

Sunday, February 2, is Rheumatoid Disease Awareness Day.  Spread the word.

An Open Letter to Express Scripts and Accredo

Dear Patient Care Advocates,

Since the first week in November, I have placed 30 calls (and still counting) to your Customer Service Department.

I’m not asking for much – just the Humira that my doctor ordered for my rheumatoid arthritis.  For six weeks,you have explained to me that a doctor’s letter of medical necessity was missing, or that I was refilling the prescription too soon. Or that there was some kind of unknown problem and they would look into it. And for several weeks it was simply pending insurance approval.  How can this take so long?

This is a new prescription so it’s impossible to refill it too soon.  And my doctor did send the required letter. In fact, two different Patient Care Advocates have confirmed the receipt of that letter over the last three weeks. Why are you not seeing that on your screen?

On four separate occasions, a representative confirmed that all problems were resolved and we scheduled the Humira for delivery. A rush was placed on the prescription and it was scheduled for overnight delivery.  On four separate occasions, it did not arrive. Can you explain what is happening?

I have called my doctor’s office, the very nice representatives at the Humira Protection Plan, Blue Cross, CVS Caremark, and Accredo/Express Scripts.  And still I have no medicine.

It’s difficult to place the blame directly on each of the 30 Patient Care Advocates with whom I’ve had conversations.  They can only read the information on the screen in front of them. Even supervisors seem unable to unlock the mysteries of their flawed software programs and processes.  I’ve received so much conflicting information that I find it ridiculous at this point. (Or I would if I were not experiencing severe symptoms of R.A.)  I’ve documented every phone call and results because after so much misinformation, it was impossible to make sense of it.  Even with the notes, it’s still impossible to make sense of it.

My suggestion to Express Scripts and Accredo?  Please take a good look at how your system works.  It’s flawed and is causing people with chronic illnesses to go without the medication they need to go to work – and enjoy life.

And you, the Patient Care Advocates, can help by questioning the process. When a patient tells you that he or she has been out of medication for six weeks because your company has not released it for shipment, what are you thinking? If this was your child or a parent who had to go without medicine for a damaging autoimmune disease would you not be more persistent?

Hoping that the next time you tell me the shipment is scheduled it actually arrives.

Sincerely,

A Person with Rheumatoid Disease

Note:  Please feel free to pass this letter on to others. This is not an isolated problem. Perhaps you know someone whose medication has been delayed by misinformation and system errors. 

A Battle with Rheumatoid Arthritis

RA awareness

Most of the time, my battle with Rheumatoid Arthritis (RA) is not with the disease but with  doctors, insurance companies, and mail order pharmacies.

Doctors only treat what they can see – either with their eyes, with MRIs or ultrasounds. If I don’t find exactly the right words to persuade my rheumatologist that I’m having difficulty functioning on a daily basis because of pain and fatigue, it may be another three months before I have another opportunity to state my case.

I recognize her doubtful glance.  The lab results are negative for the rheumatoid factor and she sees no visible signs of swelling or redness in my hands. Which, by the way, is the only part of my body she examines.  I wonder about this. RA is a systemic disease, not merely a disease of the hands and feet.                                                                                                                                                                                                                   protein-biomarker

After agreeing with the doctor that there is no visible sign of RA, I reaffirm that I’m in pain and having difficulty sleeping. Each time I roll over in my sleep, I hurt. And it wakes me up.  I remind her that I’m seronegative for RA.  It doesn’t show up in routine blood tests. I’m not certain if it was the look on my face or the words I chose, but she informs me that there is something else we can do. A biomarker test that may uncover any disease activity.  I agree hopefully. I want to prove to her that I’m not making this up. The Vectra DA disease activity test confirms that even with the medication I’ve been taking for almost two years, there is still high disease activity. I’m relieved and concerned about my future health – all in the same breath.

My doctor wants to double my dose of Humira. Again, I agree hopefully. But the next battle begins.

After waiting two weeks for my new prescription – and numerous lengthy calls to the online pharmacy – I am promised a shipment in two days.  It never arrives.  After even more numerous lengthy calls, I discover another barrier.  The insurance company refuses to pay for the new dose of Humira. I have no medication left and I’ve informed everyone of the urgency.

A message is left for my doctor to call the insurance company and place a quantity override on the medication. I receive a recorded message from the pharmacy that states “they’re working on it”.  Too tired and discouraged to make more phone calls, I wait again for medications that are necessary and yet delayed by unknown forces.

These battles leave me with only a small amount of energy to fight the autoimmune disease that is attacking my system from the inside out.

pain chart

And these battles are not unique to me.  Ask anyone you know who has a chronic illness and you will hear the same stories. The name of the doctor, the medication, the online pharmacy, the insurance company are not important. It’s a universal problem.

Medications are delayed because “Patient Care Representatives” don’t follow through. Patients are not kept informed. Had I known about some of the barriers to receiving my medications I would have made the phone call to my doctor much sooner. The system is flawed because it lacks seamless integration. The pharmacy states it is not aware of barriers until it places the medication in the system to ship. Our medications are being shipped by trial and error.

After a break from all the phone calls, I’ll be back full force and taking command of the battles.  Onward!