Savy7

@yourcrazyfriend
I have NVLD, dyspraxia, dyscalcula, hypoglycemia prone, emotional abuse PTSD, very double jointed, IBS, I have a bifid uvula which is the reason for my speech problems, hyperacusia. Have been misdiagnosed for Marfans and Elher Danlos.
Community Voices
B B
Community Voices

What do you do when you can’t sleep?

<p>What do you do when you can’t sleep?</p>
152 people are talking about this
Community Voices

Suicide, is it always a sign of mental illness?

I have had many suicidal thoughts and attempts over the last 40 years. I have been through therapy, ECT, currently on medication and work with a psychiatrist monthly. My Dr and I discuss suicide frequently but I have never asked him if suicidal thoughts/attempts are always a sign of a mental illness. He asked me if I got to the point of making another attempt would I reach out to him, I said no.:-(. He said that I deserve to ask for help. I know I do:-(

You see I'm really just tired of living. I work fulltime, have raised a great family but I continue to struggle with suicidal thoughts. I have had these thoughts for so long that lately I feel like giving up. I am only alive because I would hurt other people but why can't I to put me first?

Is suicide always a sign of mental illness or is it sometimes just a collection of circumstances?

Thank yu for listening.

28 people are talking about this
Community Voices

Suicide, is it always a sign of mental illness?

I have had many suicidal thoughts and attempts over the last 40 years. I have been through therapy, ECT, currently on medication and work with a psychiatrist monthly. My Dr and I discuss suicide frequently but I have never asked him if suicidal thoughts/attempts are always a sign of a mental illness. He asked me if I got to the point of making another attempt would I reach out to him, I said no.:-(. He said that I deserve to ask for help. I know I do:-(

You see I'm really just tired of living. I work fulltime, have raised a great family but I continue to struggle with suicidal thoughts. I have had these thoughts for so long that lately I feel like giving up. I am only alive because I would hurt other people but why can't I to put me first?

Is suicide always a sign of mental illness or is it sometimes just a collection of circumstances?

Thank yu for listening.

28 people are talking about this
Community Voices

Suicide, is it always a sign of mental illness?

I have had many suicidal thoughts and attempts over the last 40 years. I have been through therapy, ECT, currently on medication and work with a psychiatrist monthly. My Dr and I discuss suicide frequently but I have never asked him if suicidal thoughts/attempts are always a sign of a mental illness. He asked me if I got to the point of making another attempt would I reach out to him, I said no.:-(. He said that I deserve to ask for help. I know I do:-(

You see I'm really just tired of living. I work fulltime, have raised a great family but I continue to struggle with suicidal thoughts. I have had these thoughts for so long that lately I feel like giving up. I am only alive because I would hurt other people but why can't I to put me first?

Is suicide always a sign of mental illness or is it sometimes just a collection of circumstances?

Thank yu for listening.

28 people are talking about this
Community Voices

Thumb joints

I recently dislocated my thumb joint just above my wrist. I thought I broke my wrist! So painful! They say that I have sprained my wrist. Most of my joint pops or dislocations do not hurt that much anymore but wow. Now it is subluxing all the time. Anyone else have this and how do you stabilize it?
#thumb

7 people are talking about this
Community Voices

Thumb joints

I recently dislocated my thumb joint just above my wrist. I thought I broke my wrist! So painful! They say that I have sprained my wrist. Most of my joint pops or dislocations do not hurt that much anymore but wow. Now it is subluxing all the time. Anyone else have this and how do you stabilize it?
#thumb

7 people are talking about this
Community Voices

New mug!!!

<p>New mug!!!</p>
10 people are talking about this
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It’s Okay To Be Angry With The World

I’ve grown up always knowing that life wasn’t meant to be fair. That your place in life is largely due to outside influences beyond your control. Your abilities in life and what you are able to achieve are in part due to where your family grew up and their financial status in society.

Does that give me peace in life, absolutely not. I want the ability to control my life. To determine my goals and the steps necessary to make them a reality. I want to be known as indomitable and that I didn’t let obstacles stand in my way.. that all changed when I was diagnosed with not one or two, but four rare diseases.

I have survived a horrible childhood full of abuse, torture, and neglect. I should have been a foster kid, but social services didn’t find me. But at the first opportunity, I was 13 years old, I also had my abuser arrested and testified to put him in prison. I deal with PTSD on the daily.
But I survived.

Two days after my 19th birthday, I was unceremoniously kicked out of my house by my mother. During my senior year I had become very sick and missed a month of school. Because of this I wasn’t able to graduate with the rest of my class. Without a GED or high school diploma I worked whatever job I could and slept on the streets for four years. Eventually I saved enough and earned my GED and enrolled myself into community college. Through grace I avoided heavy drug use and chemical dependency while I watched it destroy lives and families around me. And I survived.

In my mid 20’s I developed symptoms of a rare disease that almost killed me. Profound weight loss and massive hair loss was caused by malnutrition. Everything that I ate went right through me. I was gas lighted at ER roooms because they didn’t believe my symptoms and accused me of being anorexic. Luckily I was diagnosed with Celiac disease in time to be saved. Another month and the doctors weren’t sure I would be alive. But I survived.

I went on to have a long career as a merchant mariner in the oilfield as an offshore mechanic. Heavily dominated by men, I often sought refuge in tools because they didn’t talk back. Being introverted, I was unable to express my feelings and frustrations. I often lost myself in jobs and was praised for my mechanical ability, but also didn’t make friends. My lack of communication skills meant it was hard to develope leadership skills, make friends, work as a team leader, or gain trust from my group. Because I was different, I was often targeted. I expressed outrage at the injustices I experienced as often the only woman onboard. In response my reports was ignored and I became blackballed in my industry. I thought sacrificing my personal life and devoting my life to my work would give me the acceptance and life I’ve always wanted with my crew. I was very wrong. In 2015 when the oil market crashed everyone lost their jobs. Because I had earned a degree despite the Celiac Disease, I directed into a new career path, as a defense contractor for the military. I survived.

I did odd jobs until landing that job as a defense contractor. I worked land construction and was set on fire by my boss, broke my toe, and almost had my finger cut off due to the negligence of others on the job site. Because I was a woman I was blamed, dismissed, and let go.

As a defense contractor I believed I had finally made it. I finally had health insurance and could finally be tested for the random symptoms and abilities I had. I was diagnosed immediately with hyper mobile Ehlers Danlos Syndrome, Postural Orthostatic Syndrome, and Mast Cell Activation Syndrome. I could no longer work physically demanding jobs as it was destroying my body. I could no longer turn a wrench because my wrists would dislocate and I didn’t have the hand strength anymore. How did I manage my health conditions with a new job and a new career? I worked as long as I could and did what I could until discrimination and lack of work ability forced me out. Again, I gave everything I had, my brain was there but my body was not. I felt trapped in a body that betrayed me. But using that health insurance allowed me to be diagnosed with Autism and ADHD. This explained why I could never verbalize my frustrations and affected my communication skills with others. And I survived.

Yet the random symptoms continued. My ability to walk, talk, remember, and participate in work meetings was compromised. The constant fatigue, lack of strength, numbing, and stabbing pains told me that something else lurked beneath the surface. Six months ago my rheumatologist told me I had multiple sclerosis. Long wait lists, incompetent doctors, and ignorant people in support groups led to a delayed diagnosis. So what now? I know I will survive. But there is no road map for my journey with rare disease.

I’ve lived my whole life thinking that if I could just overcome this one obstacle everything would be alright. That people would see my worth and give me my place in the world. It’s been a hard road only to realize that everything I’ve worked for can be taken away with a diagnosis.

It’s maddening to know society writes me off and expects me to live in poverty because of a diagnosis. It’s okay to be furious with the world. It’s perfectly normal to by angry with a body that has betrayed me. It’s okay to feel misrepresented by doctors and patient advocates who don’t understand your struggles. It’s normal to be angry at friends, relationships, and family members who left in your struggle with health because they had a life to live, and it doesn’t include you. It’s eye opening and raw to become aware that society labels you as a second class citizen and doesn’t provide the necessary resources to survive. There’s a reason why people who live with disabilities have a 200-1000% higher risk of severe depression and suicide. That over 90% of people who live with disabilities live in poverty and report a lower quality of life.

It’s perfectly okay to be filled with righteous rage at your condition, how you are treated, your perceived health outcome, and your lowered quality of life. It’s okay to voice your anger and ask for help. It’s okay to share your story of choosing rent or medications. Health insurance or utilities. It’s okay to advocate for change to help yourself and others. It’s okay to scream from the mountain tops because life isn’t fair. That health insurance companies can choose what medications and treatment is covered and what shitty doctors are considered in network. It’s okay to have enough anger in you to power the sun.. so then use it to change your circumstance. Use it to advocate for others. Use it to make a difference in this world.

Suffering and indignities are unjust and unfairly target the disabled and rare disease patients just like you and me. Discrimination of the disabled affects our out of pocket costs for health care, where we can live, who our medical team is, and our quality of life. So get angry and let your voice be heard.

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Impermanence

<p>Impermanence</p>
69 people are talking about this