Comments on: Through The Looking Glass

By: Nicole

Nicole — Mon, 11 Nov 2013 02:53:04 +0000

Thank you for another beautiful post. The last 3 years have been such a surprise. I feel that I have an understanding and relationship with the Dragon that is JRA. I don’t know if what I have been experiencing are side effects from long-term medical treatments or side effects from having JRA for 14 years but the newer health issues that arise often send me into a spiral. I don’t know this terratority and the time spent searching for cures or answers can leave me feeling gutted. There just may not be any solutions and struggling to maintain the stamina I had several years ago is dispiriting and joyless. So, I must create a new reality. I have no idea what it looks like but giving up the struggle feels easier – the constant underlying anxiety dissipates for a bit. I do this imperfectly, to be sure.

I am most certainly not the perfect patient: that person you see in a movie who is ill but so graceful about it all. They are rarely angry and are almost Yoda like in their nature. In my mind’s eye they are always dressed quite beautifully as well.

I move closer to embracing the magical chaos of it all because that is the truth of this moment.

An abundance of joy and gratitude to you,
N

By: Sandy

Sandy — Sun, 10 Nov 2013 23:59:53 +0000

I have battled RA for 32 years. I call it a battle because despite the pain, fatigue, joint damage, and personal losses I’ve suffered, I will never give up. Yes, there are days that I give into depression, fatigue, pain and stiffness. During those times, I sleep, watch tv, or lose myself on the internet. Those are the days I need to re-group and strengthen my inner my resources so that I can rise up again and fight this disease called RA. I am a WARRIOR, and will fight until my last breath.

By: Angela

Angela — Sun, 10 Nov 2013 17:22:00 +0000

I just read your “through the looking glass” I related to your feelings and could completely understand “failures”. I lived as you did in denial for so long, well until the pain and joint damage was too overwhelming to ignore. I would go to my rheumy appointment with the hopes some how I would get good news… Fooling myself into believing that one magical day I would wake up from this nightmare, but the day came I had to face the ugly truth this is no dream it is truly my reality. I now live from moment to moment trying to make the best of what life I have. I’ve learned to find joy in this life no matter how painful the day is. I keep a little secret hope in my heart that someday a cure will be found. Thanks for sharing your personal journey.

By: Lesley Hurley

Lesley Hurley — Thu, 13 Sep 2012 08:56:33 +0000

I have just read your blog. I was diagnosed 10 months ago and first of all felt relief that I had a diagnosis, one month after having been told I had RA I was then diagnosed with Ulcerative Colitis another auto immune disease a double whammy of auto immune diseases. I thought I was coping really well, with both of them luckily I was diagnosed very quickly with both of them so had the medication I needed to start to make me feel better physically better. I have had only one small flare with the RA and one bad patch with the UC, and thought I was doing really well until on holiday last week my partner said that I was a nightmare to live with as I was always angry and no longer the person he knew. It made me suddenly aware of what was going on and I realised that I had not been coping I was just hiding from acceptance and I was and am very angry still at getting these two diseases, but having now acknowledged that and also my partner is now aware of that I feel better. Your blog made me realise that we all seem to go through these feelings and that we are not alone. Thank you

By: Ms. Rants

Ms. Rants — Thu, 06 Sep 2012 01:06:32 +0000

This is what I wish I could articulate for people who are recently diagnosed and are having a tough time accepting it. They see my positive attitude and figure that I’m in denial. I don’t know how to explain that I’m not more positive (most days – I certainly have my bad attitude days) because I expect to get better, but specifically because I know that I won’t. Coming to terms with that was difficult (though a bit easier for me, I think, because I was very young), but it makes all the difference. I sincerely hope that everyone can one day accept their situation. This doesn’t mean they shouldn’t fight to have the best life possible, but I do hope they find a way to keep their expectations realistic so that they can be happier. You did such a wonderful job of explaining all of this and I hope that many people benefit from reading it.