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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Gimme Some Sugar

sugar piles

That’s what I’m thinking right now.  Gimme some sugar. After learning that sugar may have an adverse effect on all autoimmune diseases, I came very close to eliminating sugar from my diet.  It might be a coincidence, but my Rheumatoid Arthritis (RA) improved. My weekly dose of methotrexate and monthly Orencia infusions have also improved my stiffness, joint pain, swelling, and energy level.  But the sugar – well, it seemed to be the icing on the cake. (Sorry, I really am craving sugar right now.)

Eliminating sugar from my morning coffee and avoiding all packaged foods with too much sugar made sense for me. Banishing the evil white substance was challenging. I replaced it sparingly with pure honey in a very few instances (like my coffee). If I craved something sweet, I had fresh fruit.  All things in moderation, except sugar.  Sugar was no longer welcome in my kitchen.

And then….  the Christmas holidays.  This was the Christmas that my daughters were both coming for a visit.  I wanted to provide holiday cookies, as I did regularly when they were young. So I baked. And I baked again. And again.  We enjoyed the same cookies we devoured when they were young.  We noshed, we gobbled, we scarfed up cookies. When they left, cookies still remained. And I was hooked on sugar again. My body was craving sugar.

Since then, I’ve made a few feeble attempts to eliminate sugar again.  For me, the cold Northeast winter presents a big challenge.  It’s cold, dreary, snowy. Today we are covered in freezing rain.  This is not the type of weather that encourages me to eat vegetables.  I crave carbohydrates. I want sugar.

Because I recognize that spring will arrive as it does every year – at least on the calendar – I am again determined to dismiss sugar from my life.  And my RA will be pleased. If I begin to notice a bit of relief from RA symptoms again, it will be a smoother transition to a sugar free life.

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.

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.

Soap Makes Me Smile

And Rheumatoid Arthritis and Sjogren’s Syndrome do not make me smile.  And that’s why I make soap. To forget about the autoimmune diseases that I’m battling daily. When I tangerine dream2make soap, I’m making something unique, useful, and organically good.

Creating soap batches also allows me to feel as useful as those bars of soap. I don’t feel useful as often as I need to.  My energy levels are down and my joints hurt. And that’s with a dose of both methotrexate and Humira weekly. I still can’t do some things I’d like to do.  At least not right now. Maybe there will be a point in the future that my symptoms will decrease.

Soap making is like a mini-vacation for me.  I go into my soap lab, turn on the music, and magic happens.  The creative and chemical process completely absorbs my thoughts. I think of nothing but color and fragrance and creamy suds during this enchanting time. Alchemy in action. Ordinary ingredients are transmuted into something of value.  The value in my soaps are the sense of accomplishment I experience when a batch is curing, and the way my skin feels after using my own brand of nourishing soap.

If you’d like to see the results of these soap making times, take a look at Barnaby Glen Soap. Oh, and if you decide to buy a bar or two – well, that would also make me smile.

herecomesthesun

My Life is Not a TV Commercial

humira changed life

Watching any of the ads on TV for Humira or Xeljanz, the viewer might think that all symptoms of rheumatoid arthritis (R.A.) can be easily relieved.  Some of the ads seem to picture R.A. as something that is inconvenient, an interference in our routines.  In no time at all, the patient will be living life even better than before.

Maybe so, if better than before means better than before taking the drug. Since the symptoms of rheumatoid arthritis vary in every one of us affected with it, we don’t all have the same quick results with the medication.  I’m happy for those who can find relief. I have concerns that viewers of these commercials have a working hypothesis that if their spouse, partner, or best friend doesn’t feel better after taking Humira, he or she must have a low tolerance for pain. Or needs to stop dwelling on the pain and swelling.  The general public forms opinions about the disease from these ads. Those opinions are a source of frustration for people who are living with the disease and know the realities.

In my case, Humira lessons the visible signs of redness and swelling in the affected joints.  But it doesn’t do enough to lessen the pain or control the disease activity.  Which means that while I have no outward signs of inflammation, my joints are still sustaining damage from the disease.  And it took several months to convince my doctor that I was experiencing discomfort, in spite of taking the Humira on a bi-weekly basis. Ultimately, a biomarker test showed that the R.A. was highly active – in spite of the lack of visible signs.

And so, my doctor increased the dose of Humira to a weekly injection.  My struggle with Express Scripts has been documented previously, but let me simply say that I was unable to have any injections delivered for almost seven weeks.  That meant instead of doubling the amount of medication my body would receive I was completely cut off from the drug that was helping me go to work every morning.  My body did not like this forced medication vacation. That situation has recently been resolved, and now my system is building up a therapeutic dose and I’m beginning to function at an acceptable level.

Those of you who have a friend or a family member with rheumatoid arthritis can be supportive by understanding that these medications do not perform magic.  They can take weeks to build up in our systems.  Please don’t be impatient with us because we’re not getting better as quickly as the subjects of the drug commercials. Or that the medicine doesn’t banish all our symptoms. Most of us don’t want pity. Just a little understanding that we’re fighting a battle on a daily basis.  We don’t want the R.A. to win, but some days we struggle to make breakfast, get dressed, and go to work.

After a full day of work, we’re exhausted. Fatigue is one of the symptoms. Our bodies are attacking our own joints because our autoimmune systems are in high gear. Those drugs you see in the TV ads subdue that activity, which means we now have compromised immune systems. We become fearful of germs because we have little defense against contagious viruses like colds or influenza. Autoimmune diseases eventually give rise to other autoimmune diseases.  My R.A. arrived with Sjogren’s Syndrome as it’s partner in crime.

If left untreated, rheumatoid arthritis can bend and twist my joints. Since it’s a systemic autoimmune disease, it can also affect my heart, and other organs.  So I take my chance on the lengthy list of side effects.  And I double the amount of medication I’m injecting into my system. And I worry silently. (OK, not always silently.)  I pretend that I’m not constantly thinking about either damage from the R.A, or damage from the medicine.

And I live my life outside of the  Humira and Xeljanz TV commercials in a land the pharmaceutical companies don’t acknowledge.

If you know someone with R.A. or you’ve been diagnosed yourself, what effect do these commercials have on you?