Painful Day


Today I woke up and was in tremendous pain in my hands and legs.. I had problems speaking. Which is a new problem. It’s as if there is a disconnect between my brain and mouth. I just speak gibberish sometimes. It lasts a few minutes, then i’m fine. Today feels like it’s going to be one of my really bad days. I’m hoping not. I have way too much to do.  I’m visiting my mom in Tennessee for a week, but before that I’m spending a few days with my best friend in Tampa, Fl, (I live on East Coast, FL).  I spoke to someone recently, very dear to me. Like a second mother to me. She told me chronic illnesses are awful, and that I’m refusing to accept it, she’s right. She knows me so well. I’m terrified of accepting that this could be my new normal. Is this truly how my life will be from now on?? Medications to control different things???  She listened as I cried, and screamed out my anger and frustration. She has always been my rock. She’s right, right now, i’m going through every emotion I can regarding this disease. It’s alright for me to be angry, for me to feel lost. I feel as if i’m losing the person i’ve always been. I’ve tried to remain strong and not show the emotions i’ve felt, the anger and grief over this, but I couldn’t keep them bottled forever.

Doctors appointments are insane. I see the Rheumatologist the 24, the Electrophysiologist (special heart doctor) the 25, My EMG Nerve Test the 30, and see the GI May 3, since I have gastropareisis.  Gosh, I never thought i’d have to see this many damn doctors.  The good thing is, if something happens while i’m out of town, i’m an hour and a half away from the Autonomic Dysfunction Treatment Center at Vanderbilt. 🙂  

How can I accept that this is the new normal for me??!!!!! HOW??? How do I go from the independent, always on the go woman, to barely able to walk through the grocery store, need help getting in and out of a car woman I am now??? I can’t….I can’t accept this, not yet.. Then I get so angry that i’m so alone in this. Where is my partner? Why isn’t he here! Will I have to suffer through this alone? Will I never marry? Silly questions to think about, but I think about them. I want to marry, I want to walk down the aisle towards the man I love and become one. I want to find a man that loves me despite this disease. Does such a man exist? Will I be in a wheelchair by end of the summer this year??? So many unanswered questions for my Type A mind.

This I do know. I’m strong, I’m loved by my family and friends. I have an amazing support system. I have a beautiful son. I have my faith. I will be fine. I will accept this in time. I will have to. For I have no other choice.  

Don’t take the small things in life for granted. You never know when things can change, and how much they change. Love with all you have, all you are.. And you know what? It’s ok to be sad, angry or frustrated!! We don’t have to be strong all the time. We can cry! We can lean on our spouse. I’m always here for those that wish to talk, share stories!

Be safe, and be free my readers! Until next time!

One thought on “Painful Day

  1. We have this illness, but it does not have us! We are STRONG! It is okay to go through all the emotions, but remember when done crying to pick ourself back up and put our “Big Girl Panties On”! We have to keep on keepin’ on as I say, keep our faith, and turn to our support system when we need to vent, talk, cry, laugh,etc… I love you kiddo, and here for you hon! It has taken awhile to adjust, and I still am everyday with new symptoms presenting, and is a learnign process. Keep your chin up kiddo, and don’t ever lose your smile! Remember to laugh, as laughter is the best medicine;) XOXO

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