Peas in the Office

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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.

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T Cells, B Cells, and Hope

My checklist of pre-infusion tasks for Rheumatoid Arthritis (RA) has been completed.  Orencia has been approved by my insurance company, TB and chest X-ray results are negative, an application for Orencia copay assistance has been completed, and I’ve educated myself on the biologic.

Neither Humira nor methotrexate did enough to lessen my symptoms. Severe joint pain in most of my joints is still occurring on a consistent basis, causing me to shuffle a heating pad between various joints throughout the day, at work and at home. Somewhat amusing, but troubling.

Orencia is a change in treatment strategy.  It can be administered by infusion or injection. My doctor has recommended the infusion method to begin the treatment.   It works at the T cell level, reducing the activity of T cells, which reduces activation of B cells, and subsequently reduces the inflammatory effect on the synovial lining of joints. Humira is a TNF blocker and targets the tumor necrosis factor, which can also be a source of inflammation in RA.  In my case, it doesn’t seem to be the problem.

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I admit to being anxious about this infusion process.  My daughter has an autoimmune disease and for over 15 years I’ve accompanied her to numerous medical procedures and treatments.  Each treatment carried unique risks, side effects, and discomforts.  I’m burned out, stressed out, and weary of all these medical procedures. And now I’m on my own journey through the land of medical unknowns.

Part of me is hopeful, strong, and stubbornly willing to plod on through everything necessary to fight the RA that is limiting my life.

And part of me wants to curl up in my bed and say “Infusion today? No, thank you.”

Suddenly, One Morning

Sudden attacks can be devastating

During Autoimmune Disease Awareness month (March), my intent is to do exactly what the month is devoted to – create awareness of autoimmune disease.  With that in mind, I’ll share a bit of my own story. My autoimmune diseases are rheumatoid arthritis, Sjogren’s syndrome, and Reynaud’s syndrome.  Autoimmune disease is not a solitary creature.  It travels in groups and appears at the most inconvenient times.

Rheumatoid arthritis (RA) is my primary diagnosis. Although many people go through years of doctor’s visits without a diagnosis, my own disease seemed to hit fast and hard, like a sudden attack.

I woke up one morning with raging pain in my hands and feet, unable to walk or hold a coffee cup. (That last part might seem unimportant, but it’s vital to me.)  Hand and foot pain are classic textbook symptoms for RA. It doesn’t manifest itself for everyone this way – and that is why it sometimes takes too long to diagnosis.  Perhaps I was fortunate that mine appeared this way because it was right out of the textbook.  I didn’t feel fortunate that morning.

The intense pain, burning, and swelling in my joints left me no choice but to call my family doctor and ask for an appointment that day.  When I think back, it’s strange that I never thought about RA as the source of all this trouble.  My paternal grandmother had RA. She must have suffered greatly, but I don’t remember her complaining about pain as I watched her take care of the house and her gardens with her joints twisting her body in all the wrong directions. Perhaps, like me, she felt that people would not/could not understand what she was experiencing.

My family doctor ordered blood tests and I was diagnosed within a few days.  But not with RA. My initial diagnosis was Sjogren’s syndrome (SS) because the tests were positive for it. That was enough evidence to send me to a rheumatologist for further diagnosis and treatment.  When the rheumatologist saw my hands and feet, and heard my family history, she was confident enough to diagnose the RA. It seems I’m seronegative for RA, which means that traditional blood work doesn’t show evidence of the disease. For almost three years I had no tests to prove my diagnosis.  Just symptoms.

I began a course of treatment that began with methotrexate alone. When that didn’t relieve symptoms, a dose of Humira two times per month was added.  That seemed to help for a while, but then my symptoms worsened.  I encountered problems communicating my pain to my rheumatologist at this point because my joints did not appear to be red and swollen. But the pain was becoming more and more intense.  I tried for months to convey my concerns, my pain, my inability to get through my work day to my doctor.  I had no lab tests to back me up. And yet I knew  my disease was extremely active by my pain and my total exhaustion.                         cells

Finally, my doctor realized that something was going on with my disease that could not be seen.  A few months ago, she ordered a biological marker test (Vectra DA). The results? My RA was highly active.  Since my Humira dose had already been increased to weekly and that had no effect, we discussed a new plan of attack.  I am presently waiting for the Humira to clear out of my system and will begin Orencia infusions in two more weeks.  I have a new line of attack available to me.

In the meantime, with no help but the methotrexate, I will push through those few weeks till my Orencia.  And I will again hope to find relief.

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.