All posts by Kgregory

What is the Epic Foundation?

What is the EPIC foundation
The EPIC Foundation is a 501C3 non-profit organization that provides support, advocacy, education and tools to those affected by chronic illnesses. The foundation staff, which includes trained psychologists, provides various resources to support patients living with chronic illnesses and their caregivers.
The EPIC Foundation uniquely embraces the mind, body, and spirit, by focusing on key human issues such as trauma and loss. These are the vital issues that are commonly ignored while treating chronic illnesses.
Mission Statement
Mission Statement: Empowering People with Invisible Chronic Illness (EPIC) Foundation is a nonprofit organization that seeks to empower those living with chronic illness. EPIC offers support, advocacy, and tools for coping to those living with chronic illness and their loved ones and caregivers, with a particular focus on Cushing’s Syndrome and related illnesses.
Suggestions or comments can be e mailed to The EPIC Foundation at admin@epictogether.org

You will find a direct link to their page located to the left of the page. Just click and your there.

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Lost in your disease or your life!

I think we can all look back at our lives when we were at a crossroads as to where we are going in life. I remember the stress that hit me in high school of “What do I want to be when I grow up” Your kinda lost, I thought I wanted to be a hairdresser, got my license worked but then realized I wanted to use my brain more and help people, so that’s why I changed careers, but having this illness, I am not longer that occupation I loved, I am no longer the person I used to be and I have grieved that and trying to find out where I fit in now, and where I will fit in the future. I don’t know. But I can tell you I am to sick to even think about it, I need to save my energy for my treatment and my getting better, So I have to let it go and just pray the pieces will fall into place. We all have a purpose, and I knew mine, now I have to find out what the next purpose is. I am not defined by my disease, but people ask and I share and then they disappear and that’s ok, it doesn’t really bother me any more. I am still Kelly and I still have the same heart and values and morals and likes and dislikes, I just have to live differently. Sometimes that’s where my stubbornness comes into play, I want the old Kelly back, She loved what she did and was good at it and I truly loved going to work every day. We all have our own challenges and have been given some gifts with our illnesses? Yes I mean that, I believe it has taught me, we only live once, you can’t settle for what is just comfortable, patience, helping others, caring for others, no judgements.

I also think as we age, we are meant to have cross roads in our life, or our life would be stagnant, we wouldn’t learn from others or about anything else. You get comfortable in those shoes you were living and it hard to step out of them. I believe the same to be true even if your not sick, you can be heading down one road and here comes either the stop sign or the y in the road, you may fail at something new, but you tried, you may succeed but its still doesn’t hit your core, that this is meant for me. I think by practice and error you find your passion, I remember I read a book on this topic and it said when your little, you play what your heart desires, whether that be a teacher, a mom, a ceo of a company, warehouse worker, I knew from when I was a little girl I wanted to be a mom no matter what, I wanted six kids, that didn’t happen. I didn’t expect to be a single mom raising two boys but I did it. I loved playing house, I still love to fix up my house when I can, I didn’t want to be a banker, hated math, I loved Barbie’s, but my doll house was my thing, it was a family, so for me that represented as a adult why I was the mother that I was and still am today, It was in my core. Helping others, I use to visit the widows in the neighborhood and visit because I thought they needed a friend, I still to this day like to help people in what ever way I can. So now I can help people with invisible illnesses, my life doesn’t have to end or my purpose, just find another way to use it.

But for the generation coming up behind us, I think some kids are lost, outside influences confuse them on their morals, values and their purpose, there so busy with electronics they never found their passion, so when its time to move forward they don’t know where to go what to do. Imagination is a wonderful thing our kids don’t have today because they are always entertained, since so many programs removed out of the schools, they don’t know if they want to or are good at playing instruments, or art, ect. So as kids growing up being entertained, how are they suppose to know what they enjoy other than more electronics.

I found journaling to help me find my way out of my cross roads, clears my mind, and journaling the right way, to get to know the real you, taking those tests that tell you what you would be good at, meditation but guided imagery is also a wonderful tool that I love and should be used more often.

So that being said, we were all put here for a purpose, mine was different than my brothers but that creates a balance in the world, if everyone had the same gifts, it would be a boring world. So of the most interesting people I have met are people I wouldn’t expect, total opposites of me but that’s a good thing, If you have 6 kids, each one will have a special gift to bring to the table and you have to listen to your gut and your heart to tell you what that is. Musicians are amazing to me, their talent creativity, but me, my kids cried when I sang to them. A really good sales person has a talent if you buy with out feeling pressure, I would not be a good sales person, I know this to be true, but others are and God Bless them. Some are meant to be Doctors and I would try to soak up any information that they would share, but socially not so much, I love teaching Doctors about my disease. Showing them the research I have done, because they learn something from me. Collections! No way no how, I would by every excuse they had to not pay a bill. So knowing these things, I know at least where my road is not going. Right now my road is my illness and helping who I can along the way.

So If you take one thing out of this post today, You are a gift, you are enough, you have a purpose, don’t give up, live your passion! Don’t let outside influences tell you differently because if your not living authentically and with your passions, you live your life with a empty heart.

Kelly

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April is Cushings disease awareness month!!!

The Good News

The Good News: Cushing’s Awareness
The good news is that April is Cushing’s Awareness month! Awareness means getting attention and sending a message. It means getting people to talk about the diagnosis including the symptoms and what the diagnosed experiences day to day. It could be the answer for someone still searching for a diagnosis. Cushing’s disease is still a lesser known illness and awareness is important for increasing the funding, research, and understanding that is desperately needed. With understanding, others may not be as quick to judge because of lack of knowledge. It can help those struggling to get more support from the people around them, as their symptoms and experiences are reinforced and validated.
Awareness campaigns have an impact on doctors too! They are a reminder to consider lesser studied illnesses when diagnosing. Many people who have fought for their diagnoses end up not trusting doctors because of conclusions for symptoms that blame the patients like: “you must be eating too many calories and not exercising enough” or “it’s all in your head”. People have also lost faith in some mental health professionals who have erroneously agreed with physicians that the symptoms are psychological in nature. Feeling invalidated, neglected, and judged by the professionals that are supposed to be helping us while having a chronic illness is difficult enough; it adds to disempowerment.
The good news is that there are ways you can empower yourself in the midst of living with a chronic illness. First, it’s important to self-advocate. The Wellness Recovery Action Plan (WRAP) identifies these ten steps to being an effective self-advocate:
Believe in yourself.
Know your rights.
Decide what you want.
Get the facts.
Planning strategy.
Gather support.
Target efforts.
Express yourself clearly.
Assert yourself calmly.
Be firm and persistent.
(http://mentalhealthrecovery.com)
An approach that encompasses these ideals can help you with being heard by physicians and mental health professionals (and loved ones). Doctor shopping is empowering. Think of your doctors as consultants. Find physicians willing to be part of a team of doctors within a variety of specialties to get you the best care possible.
Self-advocating doesn’t mean that you have to do it all on your own. A strong support network really does help. It may be difficult, but it is important to weed out people in your inner circle who are not supportive. The last thing you need is to spend more time trying to convince someone that your symptoms are real. How many times is it reasonable for someone to ask, “What is ____ (Cushing’s disease) again”? Allow yourself to accept the assistance of people who are supportive. Ask trusted individuals to attend doctor’s appointments with you. They may think of questions to ask that you did not. They may have an example of a time they witnessed one of your symptoms and help to continue to validate your experience. They can help you remember details of the conversation with the doctor that you may have forgotten because of the level of stress that was experienced during the appointment. You can even ask them to take notes so that you can concentrate. You may even want to ask them to drive for one less stressor.

For more information, please go to www.epictogether.org/

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Natural ways to cure heartburn.

According to estimates by the American College of Gastroenterology, around 15 millions Americans suffer from daily heartburn. These individuals may also suffer from Gastroesophageal reflux disease, or ‘GERD.’ GERD is diagnosed if an individual reports experiencing acid reflux more than twice per week.

Per Medical News Today, here are some other noteworthy facts on heartburn:
– Causes of heartburn include smoking, obesity, lack of exercise, poor diet, and certain underlying medical conditions.
– The primary symptom is a burning sensation in the chest or throat from stomach acid.
– Most commonly, heartburn has little influence on overall health.
– Treatments include antacids and proton-pump inhibitors (‘PPI’ medicine.)
Medical experts consider occasional heartburn to be natural and not a cause for concern.

Other Symptoms
As mentioned, the most common symptom is a burning sensation in the upper chest and throat. These sensations are attributable to the presence of stomach acid.
Other reported symptoms: jaw pain, abdominal discomfort and burning, and acid-like taste in the mouth.
Here are five natural remedies for heartburn:

1. Baking Soda
Straight up, baking soda is a miracle product. One of its uses – actually, its main use – is as an antacid! Baking soda made up of 100 percent sodium bicarbonate; a slightly salty tasting, alkaline white powder. Baking soda relieves heartburn, acid indigestion, and sour stomach by counteracting excess stomach acid.
How to: Dissolve 1/2 teaspoon into a 4-ounce glass of water, or a full teaspoon in one 8-ounce glass. Repeat every two hours until heartburn is gone.
2. Bananas
Bananas have a high pH level, which is vital to restoring gastric acidity to its natural state. A banana’s texture is also great for relieving discomfort of the esophagus, according to gastroenterologist Gerard E. Mullin, MD.

How to: If you’re not a big fan of ‘nanas by themselves, slice half of a banana and add it to your morning oatmeal or cereal. You can also slice a banana and add a pinch of cinnamon powder and sugar (a pinch!).
3. Ginger
Ginger is one of the best-known natural stomach soothers around. Ginger has a few benefits concerning acid reflux; its anti-inflammatory properties are especially helpful. Inflammation of the esophagus is a key symptom of those with acid reflux troubles.
How to: Ginger is quite a versatile food; it can be diced, peeled, shaved, or sliced. It can be eaten raw or added as an ingredient for salad, soup, sushi, and other foods. Perhaps the best way to enjoy ginger when it comes to heartburn is steeping it in water to make ginger tea.
Here’s a simple ginger tea recipe.

Click this image for the Ginger Tea Recipe
4. Chewing Gum
While this advice may sound a bit strange, chewing gum stimulates saliva production – a natural acid buffer. Besides producing saliva, chewing gum often makes us swallow more often and pushes acids back out of the esophagus.
How to: Well, there’s not much to popping a piece of gum into your mouth and chewing. A couple pieces of advice, however: choose sugar-free gum and avoid peppermint-flavored gum. Also, don’t swallow gum as it may irritate the lining of your stomach.
5. Herbs
Per WebMD, the following herbs have demonstrated some heartburn-relieving properties: dandelion root, elm bark powder/slippery elm, euonymous bark, holy thistle herb, ginger rhizome, gentian root, meadowsweet herb, myrrh resin, lemon balm leaf, valerian root, southern prickly ash berries, oat seed.
How to: Nowadays, most herbs are sold as supplements or as standalone items. On this note, some supplements are thought to interact with certain prescription medications, so be sure to check with your doctor. The same applies if you have an underlying medical condition.
Preventative Measures
There are plenty of lifestyle changes that may reduce the production of stomach acid. Here are a few:
– avoid smoking
– exercise regularly
– drink plenty of fresh water
– do not eat lying down
– eat a well-balanced diet
– eat smaller, more frequent meals
– limit heavy lifting and straining
– limit and monitor potential ‘trigger foods,’ including: alcohol, caffeine, citrus fruits, milk and dairy products, soft drinks, carbonated juices, tomatoes.
– lose weight if overweight or obese
– review prescription medications with your doctor

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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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Enough is Enough

As the list of my illnesses continue to grow, I question the motivation behind all of these test, I am a very compliant patient, but there comes time when you say Enough is Enough, After having the smart pill test and diagnosed with gastroporesis. My pain continues to hurt so bad on my rib cage due to the gastritis and esophagitis and the pain is radiating through my ribs so bad I thought I was having a heart attack. So I go get checked. No Heart attack thank god, But the ER Doctor said to me you keep coming in and we can’t help you why isn’t anybody getting down to the bottom of this. So with that being said, still no food, continuous heart burn and rib pain and I had to even take pain meds which I don’t do. I tried heating pads, everything, So the GI Doctor says he wants to order two more invasive tests, So I asked why am I doing another radioactive test on my digest system when the first test was fine and I would have to go off my meds again the only thing allowing me to even eat a little shake, then have a tube down my nose into my stomach to measure the ph balance. Going off my meds again. I thought about it and I decided no more tests, every test makes me worse. So If Stanford can’t go by the past tests then I will attempt the test but I have had enough.  I know Dr’s offices make money off of test being done in their offices and I know that’s a huge influence, but, it’s making me worse.  I called my ENT and told him I am going to come see him to check in to be compliant but no hearing tests.  Going into the little box for the testing causes so much pressure in my head it throws my vertigo beyond and ear pain.   Enough is Enough and for each patient that will be different.  For me 10 years and it’s enough, I continue my meds but cut some in half for less effects.  I won’t tell the Dr’s because then you are non compliant but I am extremely sensitive, so I have to do what is right for me.  If your feeling that same feeling, Stand up for yourself, listen to your gut and follow it.  Just remember you can always reschedule the test if you change your mind or increase your meds to original prescription, you have to listen to your self.

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