Is this for real?


I have been seeing a commercial for a drug for RA and to be honest, it irritates the heck out of me.  They have a picture of a woman in black and white, in a nearly bare room and she is sitting there with a hangdog look.  The picture next to it is in full color with people and activity – the tagline is The life you live, the life you want to live.  Then, because she took the drug, she gets up and walks into the second picture with different clothes and everything is in color and wonderful.

Give me a break!  How many of us sit like a bump on a log all day long for years?  Not me!  Yes, I have days when I am not moving well and it takes some doing to move my tush and get dressed and go out to an appointment.  But I have never felt my life was a drab, colorless existence – though it has had its moments.  This ad bugs me because it is implied that you can’t do or be anything unless you take this drug.  Who told this woman her life was over and she would have to stay at home for the rest of her life because she has RA?  Balderdash!!  When I did speeches for the Connecticut Chapter of the Arthritis Foundation, one message I wanted to convey was that “Yes, I have RA but my life isn’t over!”.  When I introduced myself, I would mention the activities I was doing and the last thing I said was “I’ve had RA for 20 some years”.  That usually surprised them because as many of us will tell you, we don’t always look like there is anything wrong.  That a whole other entry!

Many people with chronic illness know how important it is to be involved and have interests – we also know it isn’t going to come knocking at the door.  We have to go looking for what interests and excites us.  That doesn’t mean there aren’t days or weeks when it is so hard to gather the energy to just get dressed,  that the prospect of volunteering or helping somewhere is just too much work.  The problem with this ad is the assumption that drugs are the only way to feel better.  I notice they also talk very quickly when mentioning the side effects.  Yes, drugs help, but it it takes mind, body, Spirit and emotions all working together to really make a difference.

Often people have said to me “I don’t know how you do so much with RA”.  The answer is – simply out of necessity.  I have had times when I knew they had no idea how many times I have had a bad case of “oh-poor-me-osis” – I am the worst off person in the world and no one has it as bad as I do.   For most of the time I have had it, my husband traveled a lot, so I was home alone.  There were many times when I felt so sore, stiff and full of pain that it was hard to move around the house.  Other times I was physically doing well but I was depressed and lonely.  I would come to a point where I was so fed up with feeling low and just sitting like a bump on a log that out of desperation I went out to see what I could find to do.  I remember taking craft classes, all kinds of other classes, or I volunteered – anything not to sit at home and feel like crap.  Strangely enough, I developed new skills with my volunteering, learn all kinds of things with classes.

To make things more interesting, we moved every 2or 4 years, that meant I had to start my life over in a different place.  over the years I learned it doesn’t work to try to duplicate what was in the last place – start it all new.  I found taking classes, volunteering and joining a Newcomer’s group were really good ways for me.  Then I discovered quilting and that was something I could take with me wherever I went and there are always quilt shops, quilt classes and group plus quilters.  It was a great starting point in building a new life as I looked for volunteer opportunities, classes and Newcomer’s club.  An added benefit to the traveling y husband did was that I was invited along on some trips.  I learned to entertain myself and make provisions in case he had to go to dinner and I was at the hotel.  It meant I had a chance to check out new places – some trips I could walk well, others were just so-so.  As we moved around, we made new friends and sometimes when he had a trip, I would go on one of my own to visit old friends.  Some trips were easier to do than others, so I did what I could in the context of my joints at that moment.

The point of this is that waiting around for someone or something to make things better isn’t usually an option – I had to go out and do it myself.  If you feel you are that woman in the first black and white picture, it is up to you to create your life.  If you want some ideas or encouragement, I would love to hear from you.  Or if you have found ways that work, I would love to know about them – this way we can all help each other find what works for each of us.  I don’t have all the answers, together with comments and discussions, we can be resources for each other.

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5 Responses to “Is this for real?”

  1. Jenny Says:

    That commercial is one that I actually really like because I feel like the get it. I think maybe it is easier for people new to RA to relate because they haven’t quite had a chance to figure out how to manage it and they are in a very dark place for awhile. What I liked was the line you mentioned “the life I live and the life I want to live”…I had a wonderful day yesterday but today I am in a lot of pain and I have fatigue that I can’t push through…this certainly isn’t the life I want to live, the day I had yesterday-thats the life I want to live. Many people have had great results using that drug, I am not on it but I know several people who are. I hope I get to the point where I am able to do as many things as you do because it sounds like you’ve got it figured out well for yourself.

    • Lee Kaplanian Says:

      Thank You Jenny for giving me a different perspective. If that commercial works for you, that is great! Maybe I am just getting cynical in my “old age”.
      It feels as if the message is that unless you take this med, you will be that drab woman in that black and white world forever. Also, no one says how
      much it cost and that it is difficult to afford for so many people – that includes me. All those new meds with hope but a horrendous price tag.
      As to having it figured out – don’t I wish I did! I have dark days and other days when I just sit like a bump on a log I am still trying to understand why it
      changes so fast – I am doing well and then suddenly I am so miserable, uncomfortable and drag my ass tired. I have had RA for 40 years and I now have
      trouble remembering how it felt back then. Mostly what I remember is being scared and not knowing what was going on a lot of the time – I really wanted
      to have someone who had had it for awhile to talk to and see if there was a reason to be afraid or just a fairly normal part of RA.

  2. Jenny Says:

    I never actually thought about the message the commercial was sending, I just love the line and the picture that goes with it because its like they were in my head! As far as the medication costs they are outrageous, I don’t have any health insurance but luckily for that medication the company will help you. My doc is talking about putting me on it because nothing else is working and they will pay for the meds in full and if I get health insurance they will help with the copays, I didn’t know this until my doctors secretary gave me some hand outs.

  3. Carol Brown Says:

    Hi Lee, and Jen,

    My affliction is MS and the drug scene is much the same–outrageous! And they don’t tell you about the side effects either. I got hold of the description of the side effects and decided they were worse than what I had to deal with! My sister also has MS and her body went into full blown rebellion/allergic reaction. She thought she was going to die and then afraid she wasn’t! Fatigue, spastic muscles, balance issues, check, but “no thanks” to the drugs. There has to be a better way! I wish doctors were open to alternative therapies. Massage has really helped me too, Lee. I saw in another post where you mentioned getting relief that way.

    • Lee Kaplanian Says:

      One of the difficulties with traditional medicine is the emphasis on drugs and surgery, too often it is only looking at the physical body. As I have learned more about alternative and holistic practices, it is focused on mind, body and spirit. I remember back in the 80’s, I found myself waking up screaming in the night, sure someone was attacking me. I also was sure someone was standing at the bottom of the bed. I had no idea what was going on but it cane to a point where I didn’t know what was real or what wasn’t. I was afraid to go to sleep at night. I checked with the doc and it turned out to be a side effect of a drug. Well, that was no longer on my list any more!

      Lee

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