My Pain

By nandubb028

2 min read

Hi I've been without health insurance for almost 2 years. I suffer daily I decided to put my pain on paper Here I go.

I wear a cloak of pain, a being, an entity, almost human, but not. This cloak has changed me, weighed me down, slowed my footsteps, sucked my happiness from my very core. I plead with this cloak, leave me alone, go away. At times cloak is quiet. It is then and only then, when I can breath deeper, laugh louder, love harder, hold loved ones close. Alas cloak always makes his presence known. In those times I want to scream, but wait, I am screaming, deep inside with every turn of a knob, or staircase I climb.

At times at night I awaken, shivering from the cold, I concentrate on that one objective, pull the blanket up, the cloak tightens its grip, I can't move it not one inch, my fingers feel as If they are being torn from their sockets. I cry for help. I hear a reply, faint like a whisper on the wind. It grows louder, I still myself, " are you here to help?" I ask with hope building inside. The faint voice gets louder, until it booms in my head like thunder. The cloak is laughing and evil laugh. I yell and tear at the cloak begging for a fight, a fight I know I can not win, so I lay there cold and excepting, the pain too great the feat too difficult. In the darkness I cry, anguish is crushing me, stealing my soul, stealing my breath, stealing me.

Me, I'm still here somewhere, I know I am. I watch people with almost a ravenous hunger. The way they run or dance, or doing something as simple as bending down to hold their children or grandchildren to walk without the cloak. I get angry watching these people. I scream why me cloak? What have I done to deserve this? I have tried to take the cloak off, but it has embedded itself into my skin, it's filthy tentacles reaching deep inside, always seeking a new place to hide, a new place to unleash its fury.

Why would cloak pick me? Maybe he thought I was strong enough, strong enough for this unrelenting pain.He was wrong thank you all for taking the time to read this.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Mariah Z. Leach Moderator
Hi Nancy - Thank you so much for sharing your story. Writing has always helped me deal with my RA, and so I hope you also gained some insight and closure from taking the time to write as well. The RA community is here to support you, so hang in there! Also, I am sorry to hear that you are without health insurance. Did you know that there are co-pay assistance programs that can help you pay for medication if you need it? For example, Enbrel Support for Enbrel and RemiSTART for Remicade. Might be worth looking into to help you get some relief from your pain!
1. nandubb028 Member
 Thank you. I do feel better now that I wrote it. I do get orencia which I've taken for 7 months but hasn't helped one bit I'm so grateful for the community. It's so amazing to talk with others who can truly understand. my favorite is when I say I'm having a bad day and someone will say I know I stubbed my toe last night and I can hardly walk. Hmm. not even in the same category! I am working on my anger and try to be positive I have 3 beautiful grandchildren that light up my world one day I hope to be able to play with them! Thank you for taking the time to read this and comment stay in touch! : )
2. Mariah Z. Leach Moderator
 Hi Nancy - I'm sorry to hear that the Orencia isn't helping. Finding the right treatment can be a long and frustrating process. For me, I tried Remicade before Enbrel finally did the trick. Have you talked to your rheumatologist lately? If you have been on this treatment for seven months without any improvement maybe you should ask if it is time to move on to something else. And, yes, so frustrating when someone "has a little arthritis in their knee" and "knows what you mean" Ha! I always try to take a deep breath and, when I have the energy, try to gently educate people that RA is a serious, systemic autoimmune disease - not just aches and pains. Hang in there!
norreen Member
So sorry for your pain. Hard to believe what I may say but find a trash bag and put the clock in it and put the bag in the trash. Get positive, start by saying how much you matter and ask God to show you the way tell him you want to be healthy and you need him to show you how to do it. Be your own primemay read do some research ask for help. Foucs on the things you can do, not what you can't do. Had RA since I was 27 now 61. What about you God Bless Norreen
1. nandubb028 Member
 I'm 50 now. Was finally diagnosed at 32 years. Have always had a severe form of RA I have tried every medication out there until I lost my insurance I do take orencia self inject but it hasn't helped in the 7 months I've taken it. I pray a lot!! I'm sorry to say but in having a hard time with gods answer I can't understand why I have to live this way but, since I wrote my poem I have felt a release of my anger. I don't have a support system my husband batteled stage 4 advanced cancer and won but he seems to think NO one can hurt as bad as e did and isnt very sympathetic to my pain. My friends roll their eyes at me when I do bring up my pain which isn't very often because of their coldness thank you for your kind words nice to know they're others who understand god bless!
janet-lemay Member
Hi Nancy, My anger comes from the pain - but I do agree that the anger is more the cloak. Your poem is dark yet beautiful & I get it, I get you! My pain meds are a lifeline giving me small portions of me back- I hope you have a dr for pain. I've only been diagnosed four yrs ago but RA is ravaging my strength, mobility & changed my old bubbly self to a charming Grinch! Hang tough- work on acceptance (I am) & learn a new thing. I am happy to be your friend & support but that means you will need to be a cheerleader of sorts- to make us giggle & appreciate the beautiful! I love nature, birds, my cat & so I sit out back, taking a moment to deep breathe & leave my world -- and then I don't mind coming back.
1. nandubb028 Member
 Hi Janet. Nice to meet you. I haven't seen a Rheumatologist in a long time. I see the clinic doctor and all they will prescribe is prednisone. We both know what a great pill that is. Insert wink here. Lol. Here you go, take this medicine. Gain weight. Come back to see the doctor and first thing they say. You know this extra weight isn't doing a thing for your knees. I get so frustrated with this whole thing. But I truly am trying to be a more positive thinker I do believe life is a journey and life can be beautiful. sometimes I do loose sight of the journey. Thank you for taking the time to read my poem. I have felt great release after writing it. I would love to be an RA warrior with you as well.
Andrew Lumpe, PhD Moderator
Nancy, your story provided an eloquent description of how pain can sap our energy, hopes, dreams, perspective, etc. RA has a way of bringing about major life changes and we find ourselves having to adjust. With the new Obamacare, are you able to get coverage now (if the website only worked!)?
1. nandubb028 Member
 Hello! Thank you for reading my poem and leaving a comment. I have been on the site 6 times and each time I get a different "error" message. Now that the president has said he was looking into the problems and should be fixed soon, I have great faith that the next time I log in I will succeed. Sarcasim is a great pain reducer.

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