Painful Day

I-am-stronger-than-you-ever-thought-Id-be

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!

Letter to My Dad

my dad, my hero

 

The past year has been very difficult. I currently live with my Dad, as it’s easiest right now. Yesterday was his birthday and well, I decided to write him a letter expressing my thanks, love and gratitude to him. I want to share it with you all.

 

Dear Dad:

Happy Birthday!!!! I know this past year has been incredibly difficult. Something you never thought you’d have to deal with, me either. I just want to take this moment to say how truly thankful I am for all you have done for Mathew and I. You’ve been amazing. I know I don’t often show it, but I try to.

I try to shield the pain, and the worse of the disease from you, so you don’t have to see it. You shouldn’t have to, but you’ve still seen through it and known when I’d needed a break, or to simply lie down for a few minutes. This past year has not been easy on any of us, but you’ve stood up and been such a huge help.

You’ve always been the one I’ve gone to for support, for advice. You’ve always been my Hero, but the last year you’ve also became my advisor, mentor and caregiver. Things you shouldn’t need to do for an adult child. You though, you stepped up, and do what needs to be done. You worry like I’ve never seen you worry. I hate worrying you. I hope someday you won’t worry. This past year, you’ve been my rock, I’ve leaned on you more than I’ve ever had to, thank you for letting me, thank you for being there.

You, are the definition of an amazing dad. You have been then to lend me strength when I need it, motivation to push myself, and not give up. You’ve been there to love me, despite my frustration and anger at the world right now. You’ve taught me to accept what I can’t change, but to not give up the fight. You’ve taught me the true meaning of what it is to be a parent. I thank you from the bottom of my heart.

I couldn’t have asked for a better Father, a better Dad.

I hope to beat this someday, but if I don’t, know that even if I’m bound to a wheelchair. You’re still the best Dad in the world and you help me every single day, whether you notice it or not.

I love you Dad!

Ambre

 

My dad has been amazingly supportive, especially the past few months. I can’t imagine what I’d have done without him there lending me the strength I needed. I’m blessed to have such an amazing Dad.

A Jittery Day

ShakyGuy-Shakiness

Hello Fellow readers! Today dawned a new day, bright, sunny, crisp day! I knew upon waking it would be one of my “jittery, and difficult” days.  It’s been a busy few days, so I knew it would happen, so I set today aside to rest. Saturday was an Easter Egg Hunt with my Son; Sunday, Church Services and Easter dinner; Monday was my son’s birthday; and yesterday was my dad’s birthday! Like I said busy days!! Life has hit me in so many unexpected ways. So many things I’m experiencing I never thought I’d go through. I’d never wish them on anyone else.

On a good day I still struggle to walk, and tire easily, and stumble through a conversation. However, on days such as today, I have trouble walking, trouble talking, headache, brain fog, pain in my arms, legs, and hands, and dizziness. Days like today, I just rest. It doesn’t make me lazy, it makes me aware of what’s going on, aware of what could happen if I were to push myself. The shakiness in my entire body sometimes becomes too much and all I can do is lie down and rest.

Some people told me to get over it, to exercise, to stop making it up.. It hurts to be told that. Just because they don’t understand, doesn’t mean it isn’t real. What I suffer with, and what others that have what I do suffer with everyday is very real and very painful. Educate yourself before being judgmental. I’ve been stared at, gawked at, and pushed over by people while out.. It’s amazing to me how they treat that which they don’t understand. I’ve become kind of reclusive due to this. But why should we hide ourselves for their ignorance??? We shouldn’t! We should stand tall and proud at our strength and courage in how we handle and live with this disease everyday!!

So my readers, stand tall, be proud of who you are, no matter your limitations, or disabilities. For you know your strength and courage. For we are warriors in battle of our every day lives!!! I proudly call you friend, proudly call you by my side as a fellow warrior. We’ll fight this together, lean on each other. Support systems are a necessity when dealing with this disease. We will become our own system!

difficult day

Welcome

iWelcome1

Hello! Welcome to my blog! I have decided to blog my  trials, tribulations and journey in dealing with this my everyday life.

For starters, Let’s answer:

What is Dysautonomia:

         

Dysautonomia is a medical term utilized for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. Orthostatic intolerance (the inability to remain upright) is a hallmark of the various forms of dysautonomia. Dysautonomia conditions can range from mild to debilitating and, on rare occasions, can be life threatening. Each dysautonomia case is unique and treatment must be individualized and may include pharmacological and non-pharmacological methods. Patients should be evaluated by a physician who is well-versed in the recent treatment modalities.

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The afflicted child may visually appear to be as healthy as those around him. The manifestations are occurring internally, and although the symptoms are verified medically they are often not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity. Often patients will become more symptomatic after a stressor or a physical activity. Patients may find themselves involuntarily limiting their life-style activities in order to compensate for the conditions.

Dysautonomia conditions are widely unknown to society at large. As a result, most people do not realize the impact such conditions have on those afflicted and their families. Children who have dysautonomia struggle with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles. Yet, despite the betrayal of an uncooperative body, these young individuals face life with profound courage and incredible strength.

Many that deal with this suffer in silence. We can be silent no longer. I’m 27 years years old and this has affected my life so deeply, so much that I’ve had to learn to do simple tasks differently, to make it easier for myself. 

I will share my struggles with the world, in hopes of raising awareness for this. In hopes that more will see that those who suffer in silence, need a helping hand as well. We are strong, because we don’t want to shoulder the pain with anyone else. We take it on ourselves.

Join me, on this journey, as I battle this disease. As I refuse to let it beat me.