Disabilities for Life

My health is declining faster as I approach 50. Here goes my list of symptoms experienced daily: because of Cerebral Palsy (C.P.) my feet roll out while my toes turn in so walking is becoming increasingly difficult. I fall much more frequently. There’s no doubt a walker is in my future. Endurance becomes painful due to asthma and constant pressure around my chest. It all makes sense since the abuse my body has suffered from the C.P. brain damage. Adding up my lungs degenerating, menopausal hot flashes and PTSD anxiety attacks, merely walking does me in.
Daily, I have at least one Crohn’s attack where it happens so fast, I fail to reach a toilet in time. There are days when I lose my balance trying to get to my toilet, and run into a wall. I am covered in bruises, aching constantly from falling. My muscles tighten, shake and spasm randomly generating loss of body control, dumping coffee, difficulty with penmanship, and restricting coordination needed to type.
My fortitude limits everything I do, including thought processes and tasks requiring executive functioning. The way aging is tearing down my abilities leads me in a state of depression. Since I live independently, I worry about my near future, and my anxiety soars.
I don’t know what is going to happen. Physically and mentally, I am fading. It’s reminding me now is the time to accomplish all I want to do. Mainly, leaving a legacy.

 

No More Writing Articles

I am so mad “The Mighty” keeps publishing this article with my name on it, I can only paste comments.

Replied to publisher –

No, I am not excited. I requested you take this down because of the numerous misrepresentations. Believe me… NO ONE MADE FUN OF ME IN SCHOOL! Parents, peers, and siblings need to know the importance of supporting the child with a disability. My friends would beat up anyone who made fun of me, so no one did.

Second, doctors did not tell me what aging would do to my body. They still don’t know, and are amazed I am still alive! Parents need to know NOT to listen to professionals. They know their child better than doctors.

Your article was NOT written by me. In fact, it goes against EVERYTHING I advocate against.

I will NOT be writing for you again.

Shelly Weiss, Ed.S.

Writing for Survival

I’m writing while I can, as much as I can. For several weeks, each day has brought turmoil, including a HUGE decrease in my Social Security Disability Income (SSDI) leading to facing homelessness AND not being able to afford my best friend and life mate, Jireh (my Service Dog), news that my mother (from whom I have spent half of my adult life estranged) was in serious condition in the hospital, lost a couple close friends, had a cousin die from drug overdose, I fell in front of an oncoming car (hurting myself and almost getting run over), and the list goes on. Having numerous debilitating medical issues (most of which are exacerbated by stress), I truly feel like I can have a heart attack at any moment. For the past two weeks, my health has been chronically declining.

When I received the notice about the cut in my income with June being the hardest month as they were taking out their overpayments in addition to my reduced monthly income, my strong faith cracked. I have supported myself for the past 30 years as I have no contact with relatives. I’m a fighter as I am equipped with God’s strength and wisdom within me. Having the gift of writing, I assured my close friends if I can pay June’s bills, I can find writing jobs to supplement my income starting in July.

After all, Harry Potter book series J.K. Rowling lived in extreme poverty, receiving food stamps, until her books were published. Living in poverty changes people as Rowling states, The very best thing her wealth has given her, she wrote on her website, is the absence of worry. “I have not forgotten what it feels like to worry whether you’ll have enough money to pay the bills. Not to have to think about that anymore is the biggest luxury in the world.”

According to the website, http://www.businessinsider.com,

Living in a cramped apartment with her daughter, jobless and penniless, Rowling fell into a deep depression and admits she even considered suicide. She was forced to rely on state benefits and spent much of her time writing “Harry Potter” in cafés with Jessica sleeping in the pram next to her.

I’ve been there. I think I still am. Anxiety, depression, PTSD, and Crohn’s have all held me hostage in the bathroom the past month with concerns about bills, losing friends who think I am a loser freeloader. I feel like a burden most of the time. If I hadn’t had my personal relationship with Jesus, I would either be on drugs, homeless or dead. Each day that I am puking my guts out simultaneously while losing my bowels day after day, all I can think about is I am losing time not writing. July will be here soon. So, today, I wanted to write about having peace beyond understanding because I trust God.

Instead, I am rolled up in a ball on the floor writing on my tablet so I can write how even Christians have mental health issues. And they cannot just be “prayed away” although prayer certainly changes things. In between my night terrors about being homeless and having to live on the street, I am writing AS MUCH AS PHYSICALLY POSSIBLE my book about being real. About following your convictions so you can look in the mirror, which is why I told an editor last night to take my article down because they changed my wording and it did not reflect my ultimate goal of giving all glory to God. (The byline included my personal blog where I could eventually generate income if I get enough readers.)

I’m not giving up I will write my books every day, all day, getting published and out of poverty. My God has never failed me, and never will. In fact, this post will be another chapter in my book, The Christian Bohemian, Not Your Conventional Christian.

Social Security Mistake Brings Peace

Going on the third week after receiving the Social Security letter informing me not only would my SSDI be cutting my monthly income by nearly 25%, my June check will barely cover my rent since they are taking out the total overpayments in one check.
To say I have been petrified is an understatement. I am alone, meaning I have no relatives to help me. In fact, I have 6 major disabilities where I struggle with and daily living activities are challenging. The older I get, the less control I have over my body. Fortunately, I have been independent for my entire adult life, but my body is declining.

Since I fall approximately twice per week, I have a Service Dog named, Jireh, meaning “the Lord will Provide”. Jireh has been with me over 7 years and is truly my best friend. She goes everywhere with me, and is my life companion. With this cut in my check, I can’t afford to keep Jireh. I will barely receive enough money to pay rent and electricity.

So I made plans to send Jireh to a good friend who has money to take care of her as she deserves. As for me, I planned to lay in bed for the rest of my life.
There is one caveat- I dedicated my life to Jesus on May, 15, 1983. My life is not my life… I gave my life to Jesus, meaning I strive to follow Him and glorify God with my life.
This means I can’t wave the white flag and give up. Period. No exceptions.
Fortunately, some extraordinary friends have stepped up and agreed to help me cover June’s bills. Also, I have a few credentials, such as being a Licensed Mental Health Counselor, a Biblical scholar and a published author of several books and numerous technical papers.
This morning, my infinite number of calls and emails resulted in a Social Security Supervisor calling me to set up a court hearing. An hour later, I understood Social Security made a mistake 3 months ago in increasing my income. Since then, my rent has increased by $70. It’s a mess.
Bottom line – After hearing the lady trying every resource to help me (all of which I have contacted to no avail), a sense of resolution washed over me. I interrupted her and said, “Ma’am…I hear you trying everything to help me, and I am so thankful for that. An honest mistake was made. I am not eligible for the income I have been receiving.”… she replied, “I am so sorry… I am trying everything to help you…” I stopped her by continuing, “Ma’am, you have helped me mentally. You have explained the situation and tried everything you could. Thank you. I am going to be fine. I have a strong faith in God, and He has taken care of me my entire life. God has this,” and I thanked her again, wishing her a great day.
Some people will think that is giving up. But no… for me, I got the chance to glorify God. And with my time and talents, I will earn extra money freelance writing about how amazing God is. After all, that is why I was created.

Appealing Disability Changes

Social Security News picked up my blog entry on losing 25% of my SSDI and retweeted it. I finished my appeal and added the following (below). Thank you to everyone offering to help me. I fell yesterday and landed on my back, am now in pain, yet am writing all I can to use this time to find writing income before it’s too late.

Added in my Disability Appeal:

I filled this out the best I could. The change in not having my Medicare covered will leave me homeless without family. I was only able to renew my apartment lease (which increased approx. $70) because I was eligible for State paid Medicare. When the State pays, I earn too much, but when I have to pay, I cannot even afford rent and electric. My service dog helps me walk and I won’t be able to afford to keep her. I truly will be alone on the streets. And it costs $1,500 to break lease. HELP

Politics Destroying Lives

Friends, we can’t afford to ignore political issues anymore. The changes with the Affordable Care Act is affecting me. Since you know me, it is impacting YOU! The change in the law could take me from the happiest time of my life to losing EVERYTHING, and being on the streets. No exaggeration. Fortunately, I have the intelligence to appeal the decision while thousands have no background in disability issues. Also, I have generous friends who are helping me with June’s bills, when the government is taking out 25% of my SSDI. By then, hopefully I will win my appeal. If I don’t, I can stay in my home with little air conditioning, going to food banks, and investing all my time to freelance writing (I am already doing the latter.) I will be one of the lucky ones. We MUST vote, advocate, and educate on behalf of people with disabilities.