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. 

Preparing for Cuts in Social Security

Thankfully,  my friends are coming to my aide and helping me survive the Social Security cut in my check for June. There have been a few people who have told me they are facing the same problem- the State will no longer cover Medicare Part B, and they are deducting previous Medicare payments from their June checks. I have a feeling this is about to happen to many people and they are not preparing because they didn't read the letter from Social Security. By the grace of God, I had notification this was happening, so I submitted my appeal and have friends who are helping me pay June's bills.

I have times of severe anxiety, where I lay on the floor, clutching a pillow, not knowing what is going to happen to me. I am writing like a maniac, several projects,  so I can generate income through writing. Thankfully, I have time to write in the comfort of my own home before I am homeless. All I can do is take one hour at a time.

Of course, there are people telling me if I get a job, this wouldn't be an issue. I sent him this video and comment:

I have 3 graduate degrees and had a mental breakdown. Now, my mental health issues keep me homebound. I am glad you are able to work. Please don't discount those of us who want to work,  yet are medically unable to do so.  And, yes, I know Nick. Please don't compare people with disabilities.  We are all different.

Today's Blog

Here it is...
christianbohemian.blog/2018/05/03/he-provides/

Cerebral Palsy Aging

Cerebral Palsy Aging

Click the link above where I describe how cerebral palsy is impacting my health... Useful information for professionals, families and individuals who do not know what to expect. For further information, visit my blogs at The Writing Therapist and The Christian Bohemian

Making Dreams Your Reality... Despite Having a Disability

Response to schools limiting student's vocational goals -
https://youtu.be/_G-ppNLqg3c

Follow my blog at thewritingtherapist.blogspot.com

Turning Dreams into Reality

When I worked as a school counselor for students with disabilities, it was heartbreaking to hear high school kids getting ready to "graduate' with no transition plan. Classes were exceeding capacity with students of various physical and ESPECIALLY cognitive levels, all on "special diplomas", which are basically Certificates of Attendance. Neither the students nor their parents knew they would not be earning a High School diploma.

The county received additional funding per student with disabilities. If a child has a visible disability, no testing was performed. They were thrown in the portable behind the main campus, away from the general population.

On top of missing out on age appropriate peer interactions, the students were playing checkers and coloring all day. There was no academia from the beginning. Here they were, High School Seniors, who were unable to read, write, or do basic math. The situation was a complete travesty.

Of course, the students had no idea what would happen after getting out of high school. I went back to square one, and developed a tool to help students plan for a future based on their interests. Even defining their interests was a great challenge since, as the teacher informed me, students were not even given the option of vanilla or chocolate ice cream.

My Dream Portfolio has since been successful with court-ordered adolescents, couples in premarital counseling,  professionals desiring a career change, and every other population I have treated.

Every person deserves to turn their passions and dreams into reality. Amazingly, this is not common knowledge. Dream about YOUR ideal life with NO limitations. Brainstorm, and write down your interests, then short term and long term goals to make your dream life reality.

Resolve not to settle anymore. This is purposeful living. In a future post, I will show you how to use planners (an obsession of mine), to develop a map to your dream life. After all, staying on the right path with a clear destination in view is being effectively productive.

Disabilities - Then and Now

Currently, I am not doing well at all. Another severe knock down... I am too weak to reach up to Jesus. I will... after my bruises and broken bones heal. My heart is shattered into infinite pieces... let me rest. Jesus is holding me. I am in His lap. Until then, here's a blog entry from a few years ago.
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Since I was born with cerebral palsy, being viewed as ‘different’ by those who do not know me is the only life I know. Throughout my life, I’ve heard many comments about how tragic my disability is including a visit to Disney when I was about 8 years old. A couple walked by, pointed at me and said, “They should’ve let that one die.” At the time, I was too young to understand what they meant, but I never forgot that and many other comments suggesting I was a burden to society. As I matured and socialized in various groups, I realized that I was viewed not only as different, but as damaged and blemished.
So many times I have written in my journal about how confusing it is to be seen as lowly yet to feel the complete opposite. I would write, “If they only knew the trouble I have with pride, with knowing I have a special relationship with Jesus that I would not have if I did not have a disability. Jesus took extra consideration with me, not creating me like the norm… how cool is that!” He only gives us what we can handle, and considering He has given me multiple disabilities, that tells me He has extraordinary confidence in me… confidence that I must use with others to glorify Him.
Jesus placed great value on individuals with illnesses as evidenced by the fact that they were involved in most of the miracles that He performed. The crowds and skeptics believed only when they witnessed a blind man see, a paralyzed man walk, and a deathly ill child healed. Scripture describes numerous lives that were changed through God’s use of individuals with disabilities.
Even Jesus Himself became afflicted as prophesized by Isaiah and faced the same issues that individuals with disabilities are confronted with on a daily basis. “Just as there were many who were appalled at Him- his appearance was so disfigured beyond that of any man and form marred beyond human likeness” Isaiah 52:14. It goes on to say that people looked the other way when He walked by, and He was familiar with suffering… a man of sorrows. That pretty much describes feelings experienced by people with disabilities.
Think about it: the Savior, God’s own Son, the King of the universe was scorned and persecuted because of His ‘different’ appearance. They completely missed his being the Messiah because they couldn’t, or wouldn’t, see past His appearance. To state the obvious, preconceptions can be detrimentally inaccurate. How many people have I passed over because of their ‘differences?’ How many times have I insulted Christ by looking over someone with a disability, discounting their worth to society? And how often do I forfeit being blessed by someone’s gifts because of my busy time schedule or mere discomfort? 
Granted, because I have literally spent my entire life around people with disabilities, I don’t have the anxiety that most people have with the disabled. Yet I am still amazed at how much more I am blessed by people who I reach out to serve. I could write pages of how God has used individuals who the world overlooks to dramatically impact my life, but I will only share three examples from forming this ministry.
With the intent of serving as Jesus did and to follow a stirring in my heart, I offered to sit with a young lady named “Mandy” while her parents went out on “date nights.” I had no idea how much I would be the one blessed and served by Mandy instead of the other way around. Mandy doesn’t verbally communicate and is fully dependent on others for basic needs including needing medication to tell her brain to go to sleep and rolling over in bed. Yet Mandy is always smiling… and she knows what is going on around her. She laughs at jokes on TV, she gets excited when she hears her parents walk in the door, and she looks into my eyes intently when I confide in her. Personally, I believe Mandy is always smiling because she has the joy of Jesus inside her, and I just know that she and Jesus share an incredibly intimate relationship. How else could she be so happy knowing she has lost all the friends and freedom she had before her accident? I find myself jealous of Mandy and the joy that she has… I want to know her secret. Isn’t that how we bring others to Christ, by exhibiting ‘something different’ that makes people want to know our source of joy?
I’ve also recently met a new friend named Mac who, like Mandy and myself, the world views as ‘blemished.’ Mac loves to worship Jesus and doesn’t care what people think about him when he claps and dances at church. Again, I want to know Mac’s secret of how to put aside my prideful inhibitions and focus solely on worshiping God. How freeing it would be concentrate completely on worshiping Him instead of worrying who was looking at me and what they were thinking!
Finally, I’ve met an 11 year old named “Nathan” who has trouble making friends because of his disability. Nathan has difficulty with social skills and prefers doing things by himself as opposed to being in a loud, noisy group. Yet he has the intellect of an adult, using vocabulary that I, a college graduate, have to ask him what the words mean. And Nathan hasn’t allowed the negative criticisms of others to steal his childlike belief in dreams and aspirations. While my peers tell me I am not being ‘realistic’ in my goals of publishing children’s books, Nathan challenges me to earn the Pulitzer Prize for my writing. Just another example of how I end up being the one who is blessed when I reach out to individuals with disabilities.
In order to reach out to individuals with differences, we must focus on the interaction with the person instead of our internal discomfort. Just because I have a speech impediment and walk with an unsteady gait, that doesn’t make me immune to making false assumptions about people with disabilities. While it’s natural to be nervous or at least uncomfortable around people who are different than us, it is not natural to voice one’s fears and anxieties for fear of hurting someone’s feelings or looking ignorant and cold-hearted. Perhaps I have more leniency to admit my discomfort around people with certain disabilities because of my own disability.
So what are some basic guidelines for interacting with people with disabilities? How can you calm your nerves enough to actually focus on the person to whom you are corresponding? As with any other dilemma, the answer is found in Scripture.
Think of how Jesus reacts to you when you fail to miss what He has been telling you. Perhaps in retrospect, you can now see clearly ways that He has been speaking to you or showing you the path toward His will for your life. He understands our hearts and, unlike the ‘world’ we live in, He sees what is on the inside, including our motives and good intentions. Therefore, He loves us regardless of how many times He has to patiently remind us what is right and wrong. He takes us by the hand and shows us things He has shown us time after time, but we just can’t seem to understand, hear, or see as He would like.  That is how we can respond to those with hearing and/or vision impairments; see them for the person they are on the inside rather than the differences you view on the outside. Patiently love them unconditionally, knowing they are doing the best that they can do at that moment, and support them in being their best.
As for individuals with cognitive and/or mental disabilities, consider how Jesus responds when you keep doing the same sin over and over again. Everyone has an area of sin in their life where they struggle and want to stop. If you are like me, you pray for forgiveness, believing with your entire being that you won’t commit the sin again. Then life gets in the way and He has to remind you yet again not to do that anymore. Individuals with mental impairments struggle in this area more than those without such impairments. Some of the best people to pray for you are those who have to consciously and continuously rely on God for everything, these are the people who personally know the power of His hand and regularly witness His miracles when the ‘impossible’ becomes reality…these are the people who have hope when all hope is gone as they reflect on the numerous ways God provided a way when there appeared to be no way… and these are the people whose faith is secure in Him after learning by personal experience that He will never leave nor forsake us.
Christ said that the insults of those who insult us fall on Him. That means that when we insult other people, even in our mind, we are insulting Him. He has no favorites, neither should we. In fact, to place less value on someone because of their differences and limitations devalues God’s creation. The church is made up of diverse individuals to meet the diverse needs of the world. When we exclude a group or individual because of our ignorance, discomfort, and assumptions, we are neglecting a crucial part of the Body of Christ.

“Remain true to the faith. We must go through many hardships to enter the Kingdom of God…” Acts 14:22

Blogging Business

The number of people reading my blog posts has multiplied by TEN! WOO HOO! My goal for this week is MARKETING, MARKETING,  MARKETING. Hard work and persistence pays off. Focusing on your brand is key as you form online communities with others who share your passions. For example, I will be connecting with other brain geeks, psychotherapists, writers, and Bible scholars. Mental health and physical rehabilitation white papers intended for professional submission, as well as material from two of my book manuscripts will also be peppered throughout. 

Back to my cave I go, being a recluse. My happy place. 

By the way, I am LOVING Instagram's new story features. Add me, and click on my story as I post throughout the day. My IG is Shellyedsfsu.

The Air I Breathe

I was so afraid my power would go out in the hurricane since the eye was directed right to me. With respiratory problems, I was especially scared. But God had me... I never lost power. As Job 33:4 says, the Lord Almighty is my breath of life. With friends texting me throughout the night, praying with me while they were in the worst part of the storm, I was never alone. My God, You are the air I breathe.

Face It

I'm getting old. Seriously. My body is exhausted. Cerebral Palsy ages my body quicker than those not having a disability. My friends are not use to my limitations, and neither am I. Yet I notice the gradual decline. Remember, I have 6 or 7 disabilities, and I have always fought them.

This is not to be a pity post... more of an educational informative (is that redundant?) so other's know possibilities of what aging can bring.

It's hard to catch my breath. Sometimes, when I don't sit down and rest, my throat fills with phelm, making my choke. Sometimes my food won't go down because of the blockage.

My vision is going, and I can't read without glasses.

I no longer have control over Crohn's. Since my diagnosis in 11th grade, I could feel it coming and get to the restroom. Not anymore.

Walking is harder - no stamina.

Depression stays longer, and goes deeper. I've spent much time in the pit.  It's harder to get out.

Memory is bad. I forget how old I am, what friends I have walked away from,  and am losing things.

I could continue, but it would take too much time. I've been organizing so I know where to find things, and this has me drained.

Thank goodness I have a career in writing with intensive knowledge of Psychology and the Bible!

I sometimes think my death is getting close because I am facing possible colon cancer. This gives me a sense of energy to write, write, write so my life glorifies God. He is my strength.

Do what you can when you can. Life can pass by without your realization.

Asthma

Here is an old blog entry on Asthma... let me say Asthma, menopause, and Tallahassee humidity does not mix...

Asthma. Not many people know I have asthma so I must have an extremely mild case. I was diagnosed with it about ten years ago when I went to an Ear, Nose and Throat doctor, which I can’t even remember why I went to the doctor. To be honest, I think a coworker told me he was handsome and I wanted to see for myself. I called in with ‘possible allergy’ symptoms and left with a nebulizer and asthma diagnosis!

Truly, I think the asthma is related to my Cerebral Palsy. According to the National Institute of Health: The majority of individuals with cerebral palsy will experience some form of premature aging by the time they reach their 40s because of the extra stress and strain the disease puts upon their bodies.  The developmental delays that often accompany cerebral palsy keep some organ systems from developing to their full capacity and level of performance.  As a consequence, organ systems such as the cardiovascular system (the heart, veins, and arteries) and pulmonary system (lungs) have to work harder and they age prematurely.

           
So I really don’t feel like an ‘expert’ in asthma. If it’s hot and I overextend myself, I have to rest and focus on catching my breath. If I didn’t know eventually, it will get easier to breathe, it would freak me out, so I have to comfort myself by saying I will be able to find a natural breathing flow again.

Asthma is very scary – I do not know from personal experience except to imagine how I would experience a more severe case.

Old Post About Anxiety

Life with Anxiety Disorder

Medical Condition #6 – Anxiety Disorder

For the sake of space and redundancy, I will combine anxiety and PTSD in this final category. There are many forms of anxiety (social phobia, generalized anxiety disorder, agoraphobia, post-traumatic stress disorder, etc.) and most are characterized by excessive worry about events that are usually unlikely to happen. The anxiety attacks tend to be triggered by past events (hence, soldiers returning from combat have a high likelihood of PTSD, and many would rather not discuss the events). I’ve buried so many events that my personality has been negatively scarred by the events of years ago.

Again, there’s an endless cycle – anxiety leads to depression, leads to paralyzing feelings of staying in bed, leading to more anxiety from missing so much work. The cycle is vicious and merciless.

Speaking of ‘denial’, since I am feeling functional today, I am not going to dwell on the anxiety or other conditions anymore, at least right now. When you can put your dysfunctions aside and live, even ENJOY life… do it. Whatever it takes, live out your life!

Invisible Illness

Found this wonderful site, Mad in America (http://www.madinamerica.com/) which is written by medical experts, specifically those in the psychology field, about the misuse of diagnoses and medications. Story after story of how patients' lives were completely altered by the medical community. That is a danger with invisible disabilities- even medical professionals cannot diagnose invisible illnesses with certainty. Face it, even though clinicians use the DSM as guidelines for identifying symptoms, psychology in itself is subjective. Disorders rely on patient's reports, and who can measure one feelings compared to others? How does one even identify the norm? Depression,for instance, is frequently measured by The Beck Depression Inventory, where the individual rates himself on a scale of 1 -10. Questions ask things related to sleep, appetite, happiness and sadness.  At one period of my life, I would go 48 hours without sleep. I remember having a sense of accomplishment when I slept for two hours straight. Lately, I sleep anywhere from ten to twelve hours a night. Eight hours would seem excessive a few years ago, but it is not enough now. How do you measure things like sleep and mood? Results determine diagnosis labels, and ultimately medication. Think about the huge room for error!

This website is an eye opener to the power given to medical professionals.

Do I truly have Depression? Anxiety? PTSD? Attention Deficit Disorder? Agoraphobia?

Do I need to be on medication? Which one(s)? How much?

What if they're wrong? What if I'm wrong?