Tag Archives: Autonomic Dysfunction

Just what is a invisible illness?

What are Invisible Disabilities?
Invisible Disability, or hidden disability, is an umbrella term that captures a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature. Invisible disability, or hidden disability, are defined as disabilities that are not immediately apparent. Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.
People with some kinds of invisible disabilities, such as chronic pain or some kind of sleep disorder, are often accused of faking or imagining their disabilities. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.
Invisible Disabilities are certain kinds of disabilities that are not immediately apparent to others. It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.
Nearly one in two people in the U.S. has a chronic medical condition of one kind or another, but most of these people are not considered to be disabled, as their medical conditions do not impair their normal everyday activities. These people do not use an assistive device and most look and act perfectly healthy.
According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.
About This Image: Woman with migraine sitting on a bed holding a white mug with her head resting on her hands and knees.
Generally seeing a person in a wheelchair, wearing a hearing aid, or carrying a white cane tells us a person may be disabled. But what about invisible disabilities that make daily living a bit more difficult for many people worldwide
Invisible disabilities can include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living.
For example there are people with visual or auditory impairments who do not wear hearing aids or eye glasses so they may not seem to be obviously impaired. Those with joint conditions or problems who suffer chronic pain may not use any type of mobility aids on good days, or ever.
Another example is Fibromyalgia which is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this hidden condition.
Other Types of Invisible Disabilities
Chronic Pain: A variety of conditions may cause chronic pain. A few of those reasons may be back problems, bone disease, physical injuries, and any number of other reasons. Chronic pain may not be noticeable to people who do not understand the victims specific medical condition.
Chronic Fatigue: This type of disability refers to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a persons every day life.
Mental Illness: There are many mental illnesses that do qualify for disability benefits. Some examples are depression, attention deficit disorder, schizophrenia, agoraphobia, and many others. These diseases can also be completely debilitating to the victim, and can make performing everyday tasks extremely difficult, if not impossible.
Chronic Dizziness: Often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.
People with psychiatric disabilities make up a large segment of the invisibly-disabled population covered under the Americans with Disabilities Act of 1990.
Invisible disabilities can also include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living. If a medical condition does not impair normal activities, then it is not considered a disability.
96% of people with chronic medical conditions live with an illness that is invisible.
Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.

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The EPIC Foundation Challenge.

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https://www.facebook.com/kelly.s.gregory…/…/1721698741270773

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When there is no cure !!!!

I recently went to Stanford and I was all positive except the IVIG treatment makes me so sick, but I thought Typical check up, plan the rest of my treatment plan than happy du da day! Well I got to the Autonomic clinic and I see my Dr and I said only 6 more months and I cured right? He looks at me says “No” This IVIG is not treatment for your disease its for the rare antibody we found. There is no cure. I was speechless. I thought that’s what the treatment was for, “No” It was only for the antibody. So I sad there he did a exam and I have definitely gotten worse. Every thing I asked I got the same response, Its part of the disease. So I don’t know what made me come out and ask but I asked “am I going to die?” He said not from this disease, but Kelly you are so rare your disease is so new but Washington Research Institute is doing a lot of studies and a cure can be around the corner, But this disease won’t kill you, we just need to treat the symptoms and keep you comfortable, I didn’t like that response. So I said is there anything I can try? Yes, but there are no study’s that it does or does not work, And you can loose your kidney and liver in the process. I asked would you do it, He looked at me and said “No” I said that means this entire time I am been sicker than a dog for a week every month was for a antibody, yes he said and there is no study that this IVIG is going to do anything for it. So this entire time, I am going through hell only to think It was to make me better and No one has been on my dose, for the length of time that I have been on it. He said I am it??? Yes, I said well do we stop the IVIG, He said no the study from Washington Research Center wants you to finish up to your year mark, do more biopsies see if the antibody is gone, but either way its not a cure so why? Research for other patients, He said you can opt out, I thought to myself I never would have opted in if I knew I was the first. So we will cut it own from 5 days to 3 because days 4 and 5 kill me. So that’s the first appointment. Now I get to see the GI Doctor who basically tells me any of the medications I could get could hurt me more than help me, but would you like to see a nutritionist, For what purpose I ask, I can’t eat, well she can tell you what foods to avoid, I said well It’s easier to say what I can eat, nothing but protein shakes. Well puree your food, I said you don’t understand it hurts to eat whether its a pureed taco, it’ still going to hurt. So she asked if I wanted to have Botox injected down my esophagus, I said isn’t that a little close to my lungs my heart, my swallowing function, yes you would be very risky, ok next option, injections all around my rig cage for the pain from vomiting, ok but that’s temporary, Yes, There is a surgery of putting a pace maker in your stomach but most people don’t like it and you can for sure see it an feel it, okay, what about my Hiatal Hernia, no we don’t want to fix it unless absolutely necessary but we could cut the opening to your stomach to make it easier for food to go down, I was thinking well if you want to cut my stomach opening why wouldn’t you fix the hernia oh because it is not necessary. Oh and Kelly we are moving out of this building and going to redwood city an Emeryville by UC Berkley, So I asked what am I actually following up with you for, doesn’t seem like you want to do anything for me, well you if loose any more weight, As your doctor you would have to have a feeding tube or g button for TPN feedings, I said wait a minute no one seems to care that I have lost so much weight and your response is it’s your Dr’s responsibility to make sure your getting nutrition. So I have to watch you closer so triple up on the protein shakes because I do not want to see you go any lower because that will cause other problems. So What do you say to all that oh and by the way I’m 12 weeks pregnant so I need to get you in after we move and before I take my leave of absence. Yet not one blood test. nothing to check my kidneys from IVIG treatment, just see you soon. I left speechless! Imagine that Speechless. So I had a heavy heart the entire way home. But I will not let this disease define me or take me, I will fight it with all my stubbornness that God gave me and still continue my purpose. I have no control over any of this, I can try to lower stress, I can eat my protein shakes, by the way Costco’s protein shakes taste Nasty. So I sit in the world of I have no plan just keep me on IVIG until December, then its keeping me comfortable. Watch my stress and don’t push to much, listen to my body. Rest when my body says rest. Stay close to those I love and help people with invisible illness get through there journey. That’s all I can do. The left is up to the man upstairs.

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Of Mindful Manner

This site crossed my paths and I knew it was one to be shared, I already have purchased two shirts to help support this site, it’s real, its helpful and fits in with my page, I just love the energy these women Cassidy and Savannah have and I am sure you will love there site, check it out, tell your story and lets help get the word out about Invisible Illnesses and rare diseases. There are more out there than you know, knowledge is the key, awareness is the cure and support gives us the want to continue to fight. Check it out.
Our Story
Of Mindful Manner was born out of a need to better represent the individuals of the world who show no outward signs of their illness. Coping with an invisible illness can be frustrating and painful, but these issues are compounded by a lack of knowledge and understanding. Our reason for being is to help enlighten and encourage our friends, families, neighbors, and co-workers to address individuals with empathy and understanding. At Of Mindful Manner we know that what you see is not always what you get, and because of that, each garment is carefully curated to serve as an invitation for conversation. The more conversation that surrounds invisible illness, the less room there is for stigmas, ignorance and misunderstanding.

We want you to know that we see you and we recognize the battle you are facing. There is a whole community at Of Mindful Manner that supports you.

The Founders
Hello, Cassidy & Savannah here! We are so thrilled you have found your way to our shop. We are sisters who have had our lives tremendously impacted by invisible illness. One of us has Dysautonomia and Chronic Migraines. The other one of us has grown up with a front row seat to living with these conditions, and has shared in the burdens they can cause. That’s the thing about invisible illnesses though.. you can’t tell by looking at us, which one of us fits which description.
We know our story is not unique. Nearly half of the U.S. population lives with some sort of chronic illness and 96% of chronic conditions are invisible. So while you may not suffer from an invisible illness yourself, chances are you know one or several family members/friends or co-workers that do. We pray the future holds cures for everyone, but in the meantime we will dedicate our lives to spreading awareness in hopes of making this world a more mindful one.
Search Returns Shipping Contact Us Blog. WWW.ofmindfulmanner, link located on the left hand side of page, bring ya right to it. Kelly

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Well I thought I would share with you my new treatment.

Well the time has come for my treatment, I am blessed it’s all coming together, but never the less scary, a friend just reminded me not to be the victim but the fighter, so that is who I have to be. My treatment protocol is coming from Washington research institute, and national institution of health and Stanford. I.will be receiving ivig treatments that go between 3_4 hours per visit
My scheduleis 5 days on 5 days off. If i can tolerate the treatment, they will be surgically putting in a port, so i dont have to destroy my already calcified veins. Then we are back on 5 and off 5. There are risks but I have to say I am not getting them. Ihe first week will be the hardest , we are trying to get the home health to come do it at my home wich is 100 percent covered and keep me out of areas where people are being treated for infectious disease. That’s the goal. I was not aware this treatment will continue for a year if not longer. I will.have regular blood work and biopsys to see if the treatment is working. Each vial is $6,000.00 so making sure it working is important information and will be done at Stanford. Although this day should have been done years ago, the technology wasn’t there and reno can’t even perform my biopsys. Seriously!!!stanford does not trust the equipment or Doctors in reno because for one they do a echocardiogram and told my MVP has healed and My heart was fine, only to find out my MVP is worse and I had a heart attack and surgery done there. The simple step of turning the loop recorder down so it can read your hearts activity is pretty embarrassing, mind you the Dr did it with out any surgical attire in a Operating Room and had to be reminded by the tech he had no sterile clothing on. So many stories like that. I simply can not believe a Doctor in Reno can not do skin biopsy’s. 2017 why will no one do them, Every Dr said they can’t be done in Reno. My trust level has diminished in this town and the 49 Doctors that mis diagnosed me, but no one was willing to look outside the box, they choose to not keep up on the latest papers, journals ect. There a few good ones left in town but soon to retire, the only gynecologist my insurance covers, I wouldn’t take my guinea pig to. But there are a lot of new Doctors in town, one is my Electrophysiologist, He’s suppose to be like the best in the US, a little odd but I don’t Care, Dr Ogara, Dr Fairmond, Dr West, Dr Backman, but again none of them are treating me, it is going through Stanford and that is fine with me. One thing I have noticed about the new generation of Doctors coming into Reno, Is a lot of Indian decent and so kind, smart, empathy, and truly in medicine for the right reason, So Reno hopefully will be changing. So there r two things I’m asking any of my close friends, I might need help time to time or someone to come just sit with me, I’m also asking that please donate blood, blood is used and things removed that cure others, not just today, but on a regular basis, since I am the guinea pig for this I pray it not only works but can help all the other people that aren’t even being tested for this antibody, but I had a Dr at Stanford that went beyond the call of duty in researching who was researching my first disease the autonomic dysfunction didn’t just land off mars and pick me, I carried the antibody that causes it. So that being said I have volunteered to be part of the research team, I’m not going through just for me but the people diagnosed behind me, so I wanted to give you a update and to tell you how its going.

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