Day 338 – An un-Saturday, Saturday Apple

Art Apple - Day Three Hundred Thirty EightI was all ready to post a Saturday Apple.

In order to attempt to have a life that went beyond apple making, I instituted the “Saturday Apple.” These apples have often times been simpler images with almost no post. The decision to reel in my apple life on Saturdays may have saved not only my husband’s sanity but mine as well and I have come to look forward to them as much as I’m sure Doug has.

But today, after completing my apple I saw a post on Facebook about the risks of taking biologic medications. These are fairly frequent conversations – as they should be. Taking biologic medications are a serious decision to make and everyone has to decide for themselves what choice is best for them. I have people ask me about how I decided to start on them quite often since I speak on this blog about how effective they have been in my case. For me, it was a choice to do anything to stop the suffering I was in regardless of consequences. Luckily and fortunately – it has worked for me and I feel blessed everyday I’m better. If tomorrow it isn’t or I become ill – I will never regret that I have been given these last 5 years back.

What struck me about the question tonight that was so different than usual discussions was that a physician told this person that they would absolutely not prescribe them unless the patient insisted because of increased risk of getting cancer. Here is a report about this exact topic that came out a few months ago at the yearly EULAR conference. EULAR is the European League Against Rheumatism. The report shows no increased risk.

…..

…….

Yes, I was a bit stunned by this too.

I’ve decided to not pass judgement or write a commentary on this. I’ll just report what I heard. But what I would like to say is that there are risks to everything in life and most certainly in this crazy world bad things unfortunately happen all of the time. I choose to live for today and not worry for tomorrow – it is my personal decision – I’m not advocating my choices for anyone else. People unfortunately get cancer, we get AS, we have heart attacks and life is difficult – I’m stunned everyday by the tragedy and difficulties that people have to endure. I just don’t want people to suffer needlessly – for any reason. Naive and idealistic, I know but that is what I wish for as a person working to raise awareness of a painful and often times debilitating disease.

Until tomorrow.

Jenna

Day 338 was created in watercolor, pastel, mesh origami “paper”, polka-dot paper, thread, ribbon, and a stick pin.

*** I encourage and appreciate debate – please feel free to comment and disagree. Our shared views only help one another and increase understanding of how difficult it is to live with a chronic illness.

Comments 6

  1. Melissa wrote:

    I’m definitely at that point where I’d be willing to start a biologic med. I would not have said that a couple of weeks ago. The pain I’ve had to endure these last many months, and the suffering I’m going thru now on a steroid is no way to live. I’m so grateful that my pain subsided yesterday when I started Prednisone, but I’m so wired from it that I want to run away from myself somehow.

    I crave the life I once knew; the one where all I had to deal with was my diabetes. Ankylosing Spondylitis has taken center stage while my diabetes and Hashimoto’s Thyroiditis have shuffled to the back of the auditorium. I’m so very, very tired of it.

    I now find myself envying people who have no concept of my daily struggle, and that of others like me. If I had a magic wand, I would put myself back in time when I too was so fortunate to be clueless about the suffering of others.

    Gentle hugs all around….

    Posted 03 Sep 2011 at 7:36 pm
  2. Jenna wrote:

    Hi Melissa,

    I hate that you are going through such a horrible time. Hope the prednisone is kicking in.

    I completely understand the feeling of envy that starts to creep in. I think it is hard for people who have no experience or concept of the suffering that happens with AS & chronic illness to ever truly understand. I had to learn to let that go and look for friends who were going through or had gone through the same thing. I’ve also tried to put in my thinking that they have something difficult in their lives – something. That is life right? I just wish that as we all find a way to talk about these difficult things that people will slowly learn more empathy for people living in pain. If they only knew.

    You will get to a better place – you are in a fight. A big huge ugly fight for your health and well being – you’ll do it, you will find relief and medications that work for you. Hang on – we are with you, by your side.

    Jenna

    Posted 04 Sep 2011 at 9:44 am
  3. Pam Peterson wrote:

    For all of us on Biologics who find that they return to us a measure of life back to our lives, I thank you Jenna.

    Posted 04 Sep 2011 at 8:43 am
  4. Jenna wrote:

    Hi Pam, Thanks for weighing in. I’m glad you too have been given some piece of your life back. I was talking to Doug about this because for those of us who have chosen to take them it can feel we have to defend our decision. I will not judge people who chose it isn’t the right thing for them – I appreciate it even if I don’t understand it. All any of us can do is make the best decisions for ourselves and respect each others choices.

    Posted 04 Sep 2011 at 9:00 am
  5. Vic wrote:

    I agree Jenna. We each have to weigh the pros and cons, and decide how we want to proceed.

    Myself, I don’t even want to think about going back to how I felt before I started taking TNF-inhibitors. That being said, I also don’t think about all of the nasty side effects these medications could have on ones body. I’ll cross those bridges when and if I ever get to them.

    Posted 04 Sep 2011 at 9:09 am
  6. Jenna wrote:

    Exactly how I feel Vic.

    Posted 04 Sep 2011 at 9:45 am

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