Wednesday, August 6, 2014

Permission To Have a Moment

I was having a pretty good day yesterday. I had some family things going on but I felt as if I was in a good place. I went to the bathroom to get some water so I could take my medicine and I looked up from the sink and I was immediately thrown into sadness. Right now I am supposed to take my Copaxone shot every day and a total of 12 pills. I usually skip a few here or there depending on how I feel. Last night I didn't feel like taking any at all. I felt like I just wanted to empty every pill bottle into the trash, lock the bathroom door and lay on the floor until I stopped crying. I was having a full blown pity party.

I wish I could explain to people what it feels like to have these illnesses.I wish I could videotape my life for a week and show the world the REALITY of autoimmune diseases. I wish. So anyway, I cried and cried and cried. I typed out a quick poem and posted it on Facebook. It explained how I was feeling at that moment (I included it at the bottom of this post)and I cried some more. After I had no more tears I washed my face and I went to bed.

There is a part of me that tries to make me feel bad about feeling bad. A voice that says, "So many people have it worse than you." A voice that says,"You're not being very inspiring." A voice that reminds me that I told God I was going to accept this life so I have no reason to complain. That voice!!!! I heard it last night but I refused to listen. I told myself that I needed to cry and I needed to get it out. I am so glad that I did.

In my medical report they handed me at my last appointment there were so many words that depressed me. Progressing, stabilized, scar tissue, increase dosage, walking aid, steroids, aggressive therapy, chemo therapy, and so on and so forth. I sat in the car with my husband and I asked him, "Am I going to survive this?" He just rubbed my hand and said "Why wouldn't you?" I wanted to yell and say, "because I am tired!!!" I just rubbed his hand back and kept silent.

Anyone with one autoimmune illness knows that they are totally unpredictable. Now imagine having three or four. Imagine not knowing which illness is causing which problem. Imagine being tired of fighting a battle that you can't seem to get ahead of let alone win. I have tried so many lifestyle changes to get better. I think last night I felt like I was just maintaining for as long as possible knowing how this will end. I felt defeated in that bathroom. I really did.

However, after I allowed myself to feel as mad and as alone and as pitiful as I could. I got up. I washed my face, I prayed and I went to bed. I promised myself that I am not going to maintain my life in preparation of death. I am not going to give up or let go. I am going to do what I have always done. I am going to fight. I have had friends that took their lived because they were tired of being sick and tired of feeling helpless. I vowed that for me that would never be an option. But having bad days is an option. And I give myself permission to do just that.

I have a wonderful family and a wonderful support team. I am counting on them to support me and they are counting n me to stay in the race. I need that, I need to know that someone believes that I can win especially when I feel like I am losing. So go ahead and feel your loss. Take time to grieve the old life. Allow yourself a chance to hurt and to scream and to question your situation. There is nothing wrong with any of that. But be prepared to get back up, dust yourself off and get back in place. Winning this fight has nothing to do with quickness and everything to do with endurance. Even if you are not sick, whatever has you struggling and in a constant battle warrants an occasional meltdown. There will be necessary pit stops along the way. Just remind yourself, this is my moment to feel everything that hurts about where I am. A moment, not a lifetime.


Nobody Told Me
Nobody told me I had to run from this!
I was told to watch out for strangers and bad boys could be danger but NOBODY EVER said this THING was a threat. 
This thing that looks me in my one good eye each morning and paralyzes my one good leg at night, 
It snuck in and it brought friends. Forever changing my life. 
I NEVER knew about YOU. 
I NEVER thought my life so planned and so in order would be shattered, broken, torn into shreds by the pain and helplessness, the unknowing and dread,
Talks about wheelchairs, scooters, ramps and no chance that I will be 45 and still able to dance. 
Nobody warned me when I was in college, studying hard and soaking up knowledge that I would eventually be trapped and more dreams, just thoughts of you. 
Nobody warned me, nobody did. Could I have prepared for this, probably not. 
So this is my story and it's all that I got.
A family that wishes things would get better as I write them love notes, 6 sons and my men, seven letters. 
In case I don't make all the weddings, all the graduations, they will know my spirit soars in celebration of who they became when I wasn't there. Nobody told me. 
Nobody said be prepared, be aware. And tonight is a night where it just doesn't seem fair. Nobody told me 


  1. Writing its your calling. And trust me you ate never alone. You wrote this so beautifully!! Maybe start a blog??

  2. thank you so much! It feels good to get it ALL OUT!!!! So glad you supported me, PLEASE COME BACK! :)

  3. Beautifully written, beautifully expressed, all of it. Just beautiful!

  4. You have a beautiful talent. Your words inspire anyone who reads them. they sure inspire me. Sending you love and positivity!

  5. Thank you Ria!! I am blessed that you all take the time to read what I am feeling and going through. Please share with as many people as you can. I enjoy reaching out to anyone who can relate!