Praying the disability hearing goes well as this is our last appeal. How when I cannot hardly walk around my house without getting winded can I not be considered disabled? How when I go weeks without leaving my house could I work? My social life these days consists of visiting with friends as they drive me to and from doctors appointments. I can't go to lunch or shopping before or after but absolutely fall into bed or the couch when I walk or drag myself into the house. The pain keeps me up all night and exhausted all day. I struggle to catch my breath and walk at the same time. I lay in bed with heated blankets on and the fan going to try and keep breathing while not allowing my body temperature to get too out of control. Other days I sit with ice packs in my clothes and wet rags on my head to cool my body. Just carrying my plate from one room to the next can cause my heart rate and body temperature to jump as of I were running a marathon. Then the doctors say that the effects of one seizure takes more recovery time than those running a marathon. There are days when I awake and I am unsure who those are around me. I'm a stranger in my own home and own skin. Unsure of where I am, who I am and what is happening. Fear embraces my world and I freeze.
All these things bring unimaginable fear and apprehension. Not knowing when the next time your body will collapse and lose consciousness or go into grand mal seizure is frightening. No plans can be made. I have to have back up plans always in effect. What if I am too sick for Thomas to take Hayden somewhere. "What if's" plague my existence.
No mom should have to have a plan for their child if mom goes unconscious or has seizures. No son should have to know how to give medications, pull a mom out of seizures and know who is "on call" that day in case there is a problem.
I'm grateful for the amazing son and husband I have. For their constant love and support. I'm grateful for the countless loved ones and friends and Ward family that rescues me. I'm forever grateful for a loving Father in Heaven and Savior that reassure me and help me. And I'm blessed with the companionship of the Holy Ghost and the peace and comfort that brings me.
I do have blessings. So many. But regardless of the good. I am disabled. I am fighting a battle that can only be put on hold. It cannot be won. I cannot conquer this disease. I can fight it. I can defy all odds. I can battle my heart out. But the sobering reality is, I have an incurable and progressively disabling disease. It is literally killing me more and more each day. My body has turned on my organs and raged war on them. It believes my kidneys and liver, lungs and intestines are all foreign invaders it must destroy. I have small fiber neuropathy that is like cancer of the nerves. It is eating me alive. Nerve by painful nerve. I am experiencing muscle death. It is excruciatingly painful.
My "good days" consist of sitting on the couch watching a movie rather than lying in bed. Being able to go for a ride in the car just to escape the walls of my home that so often hold me captive. Being able to sit for 30 minutes at the table to play a quick board game before the pain and memory fog sets in. It means reading with my son without falling asleep during a sentence. It means so much less than what my life used to look like. A dear friend got married and in order to just drop by the reception for less than 30 minutes, required four days in bed.
I try not to put my real reality black and white so much. I try to sugar coat it and find the good. But the reality is. I am disabled. I cannot work. I cannot work part time. The reality is that even if I could, who in their right mind would hire me? I'm on pain medicine. I have daily seizures that cause me to collapse and sleep. I'm not sure where I am or who I am afterwords. If I raise my arms over my head, stand up too quickly, bend over without balancing myself or any other random things, I pass out. I vomit at least three to twelve times a day. I need multiple naps. My brain cannot focus for more than a few minutes. I forget so much. The pain becomes so intense I cannot think. Lights and sound irritate the tumors and migraines. I cannot go outside during the day because of the light and temperature. I cannot regulate my internal temp and therefore have to have access to heating pads and ice packs and wet rags and fans at all times. I have to be covered in the sun or lose consciousness or have seizures. And let's not forget all the times I am so confused that words on a page look like Chinese. Numbers and letters invert. The words in a book look like a foreign language. Some days I can type. Others I cannot. Some days reading comes easy. Other times it is blurry and unreadable. And if I leave the house on Monday, I won't be able to leave my bed again until at least Wednesday and if I tried to even go out twice on Monday and Thursday for an hour or two each including car time. Wow. I'd be flat in bed for a week.
Yet. My fate rests in the court of law. The judge and a work consultant will determine my fate. Not the nine specialists who treat me. Not my primary care doctor. Not testimonies from loved ones and family and friends. Nope. I get ten minutes with a judge to plead my case. Where it has already been determined. Where the questionnaires aren't about diagnosis and life abilities but how long can you sit? How far can you walk? Can you possibly do anything work related. My world has turned upside down. I have not been able to drive for over 5 years. I've not been left alone for ant significant amount of time in over 5 years. The jury has permanently dismissed me from service. The DMV has considered me disabled to the point I can no longer drive. I am confined to my bed and home. I struggle to breathe. I struggle to go to the bathroom. I struggle to walk. I struggle to regulate my heart. I fight each day to just survive and not allow my body to shut down. Yet, because my condition is rare. And a perfect little box cannot be checked. I cannot get the help I so desperately I need to be able to fight this disease.
So what do I do? I pray. I pray. I plead with my Savior. I pray for help. I,pray that the judge will really look at the evidence and see with not only his eyes but his heart. That he will have mercy on someone that is not trying to cheat any system but only get the help I deserve and have paid for. So that I can have the money from social security so I can continue to pay for my medicines and get the treatments that are prolonging my life with those I love. So I can get the treatments that make my life bearable. So I can help with the costs of those things that bring relief like chiropractors and alternative treatments to dialysis. So that I can afford my,vitamins. So that we can afford to keep on air conditioning so my body can have help at regulating my system. So I can get the basic necessities to continue to fight to be Hayden's mom and Thomas' wife. Please pray we will be blessed by the loving reach of our Savior as he softens the hearts of those that are in charge of this case.
And yes. I am still counting my blessings. I am grateful for this life because it means I am still alive and living and here with my loving husband and incredible son. For them, to be with them longer, to battle for them and with them, I will give my all and continue to fight.
Ea
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