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.

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What Would Rheumatoid Arthritis Awareness Mean?

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February 2nd is Rheumatoid Awareness Day.  Every one of us who have rheumatoid arthritis (R.A.) faces a different struggle. But we surely have some common concerns. My own experiences show me this disease seems to be highly misunderstood. So the question at hand is what would R.A. awareness mean to me?

It could mean the freedom to say “I hurt” or “I’m exhausted” without judgement or condescending comments.  There are days when I hurt with every step and I just keep walking – until I no longer can. At that point, I have no choice.  I must slow down or sit down, if possible. When someone says “Aren’t you feeling better yet?” or “Why don’t you take something for that? I saw something on TV that might help.”, I want to run and hide.  That is, if I could still run.

It could mean the freedom to say “No”. Some days I’m too tired or I hurt too much to take on that extra project – or go to the movies with friends.  I need people to understand I’m not depressed or antisocial. But I am budgeting my energy so I have enough to get up, get dressed, and go to work.

At times like this I’ve found it insufficient to say “I have Rheumatoid Arthritis”. The first time I disclosed that to an acquaintance, she told me her grandmother has that.  Further conversation revealed (anyone with R.A. has already heard this one!) her grandmother had osteoarthritis.  I am not minimizing the pain and complications that accompany osteoarthritis.  But this disease hasn’t attacked my body because I’m old. And it’s not just my joints that are affected. It’s systemic and effects my entire body.

R.A didn’t sneak up on me slowly. It hit me like a bolt of lightning.  One day I thought I was fine and the next day I woke with raging pain in my joints, accompanied by redness and swelling.  And that was the morning that changed my life.

So what is it that I want others to be aware of? That this disease is unpredictable and different in each of us. That sometimes I hurt, but I want to keep going.  Sometimes I’m exhausted and I can’t keep going.  I’m not lazy and I’m not exaggerating the pain. I don’t want anyone to feel sorry for me.  But I do want them to understand that this is an autoimmune disease which includes joint paint. There is much more to deal with than just painful and stiff joints.

Rheumatoid Arthritis awareness would mean that if anyone wants to know how R.A. affects me, they ask me. Please don’t get your information from TV commercials.

If you know someone who has R.A., find out more about it from informed sources at rheum4us.org.

My Life is Not a TV Commercial

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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?

Dreams of Ireland: The Granville Hotel, Waterford City

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As I declutter my linen closet, I encounter a small tube of hair & body shampoo from the Granville Hotel in Waterford City.

My mind lightly drifts back to the middle of 2013. Ireland was a destination I’d dreamed about for decades and this past June was the month I achieved my dream vacation (or at least one of them).  Somewhere around the middle of the trip, we arrived in Waterford City and were pleased to stay in the Granville Hotel – an historic paragon of Irish hospitality overlooking the River SuirWe traveled about the country and have encountered many examples of Irish hospitality and lovely hotels, but the Granville stands out. Indeed, the hotel has been awarded the Georgina Campbell Hotel of the Year for 2013. No doubt it’s charm and history, well preserved by the same owners since the 1979, combined with the outstanding service and attention to detail have influenced this decision.

The rooms were comfortable and charming. The food in the Bianconi Restaurant within the hotel was the finest in Ireland (in my opinion, of course). Fresh local vegetables, contemporary meals, served by an attentive staff.

All this and a bit of history, too.  The hotel was built as a private residence and is best known as the birthplace of Thomas Meagher, who designed the Irish Tricolor flag. The flag was first flown in Waterford City.  Thomas Meagher was also a decorated hero of the American Civil War and he subsequently became the Governor of Montana.  In honor of this, an American flag also flies outside the Granville Hotel.IMG_0069_2

Since I enjoy a good walk (especially in Ireland!) and the hotel is within walking distance of a number of historical sites, we wandered freely about the city for hours. Drifting about the small city streets, I remember both being at peace that I was in Ireland and being in awe that I was in Ireland.

 Of all the offerings on their breakfast buffet the following morning, I choose an Irish Flahavans porridge.  Oatmeal is always my breakfast favorite.  But it never tastes like this in America!  Ok, perhaps it was the Bailey’s I poured over the porridge. They offer Bailey’s Irish Cream, whiskey, or local honey as a topping.  It was hard to pass up the local honey, but how many times will I have the judgement free opportunity to put Bailey’s on my oatmeal?

My Ireland daydreams will continue, but now it’s time to finish clearing out the clutter in my linen closet.