When I read this, I almost felt as though I had written it myself, or if it had been transcribed from my own thoughts. I believe almost every person suffering from an invisible, unmanageable, chronic illness has felt this way at some point. It shouldn’t have to be this way and, in a both comforting and tragic reality, we are not alone.

Indisposed and Undiagnosed

I’m having a rough month.
It could go well into two or three months.
I have tried everything, everything.
I feel like I’m back to square one with the symptoms that haunted me at the beginning.
I visited my Gastroenterologist, after his month vacation, and told him that I’ve lost the five kilograms I put on, am in excruciating stomach pain, have constant nausea and am not responding to any medication.

I am tired.
I am tired of going backwards.
I am tired of telling him that I’ve gone backwards.
I am tired of explaining to people why I am “still sick”.
I am tired of being the guinea pig for a range of medications that are not making me feel any better.
I am tired of being told that I have this stomach disease, but am unable to manage it.
I am tired of my body being so fragile.

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ELDER ORPHANS; WILL YOU BECOME ONE?

I think about this A LOT. Likely WAY more than would be considered healthy. I had no idea there was a word for it but I’m glad that the situation is finally being discussed and acknowledged.

The truth of it is that either my husband or myself (probably the latter since my hubby is 7 years older) will definitely become an elder orphan.  

Why? Because I am a 38 year old, childless, only child with infertilit, chronic illness, and very few close friends or family members.  My husband is a 45 year old, childless, youngest of 4 much older half-siblings, all of whom are estranged from him except for one, who is quite a bit older and not close at all (we are lucky to see my sister-in-law once every 5 years).

The very thought of the either of our deaths terrifies me more than almost anything, other than the death of my parents, which I can hardly accept will ever happen.  Yet fearing my own death is less a fear of experiencing death itself than a fear of my husband and souli-mate being left alone.

I sincerely hope that social programs or assistance have been put in place soon, as countless senior citizens surely struggle with this fear and reality.  No one should have to live through the terror of growing old and suffering through failing health, dementia, aging, and dying scared and alone.

Sheri Lawrence de Grom

Medicare/Medical 2015
by – Sheri de Grom

What are the chances you’ll become an elder orphan? Are you 65 or older, without children and alone?

No one knows exactly how many individuals fall into this newly-created medical care category. The theory is that 25% of all Americans over age 65 are at risk of becoming elder orphans or should already be classified as such.

This vulnerable population already exists, but they have no voice or support system. Elder orphans must have advocates. However, their needs must be defined first.

We do know elder orphans are aging alone, with no known family member or designated surrogate to act on their behalf. It’s imperative we determine which community, social services, emergency responses and educational resources can help them.

This population is growing as society ages and life expectancy increases.

Geriatrics Healthcare Professionals Logo Geriatrics Healthcare Professionals Logo

The University of Michigan conducted an extensive survey…

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I ran across this great article by Julie Zeilinger on Identities.Mic.

Some disabilities aren’t exactly visible. They don’t require a wheelchair, a hearing aid or any other piece of equipment that helps us know to give up our seats on the subway or not shake our heads when we see a seemingly able-bodied person park their car in a handicap parking spot.

In fact, about 20% of people in the U.S. live with a disability, according to the 2010 U.S. census, but millions of those individuals live with what’s commonly referred to as “invisible” or “non-appearing” disabilities like depression, epilepsy, chronic pain disorder or learning disabilities.

These disabilities may vary in terms of severity or symptoms, but the people who live with them have one thing in common: They often encounter others who don’t know these disabilities exist at all, and even more resistance to understand what it’s like to live with these issues.

Here are six things people who live with invisible disabilities want people to know about what their experience is like — and, most importantly, how others can best understand and support them.

http://mic.com/articles/122187/5-things-you-must-know-about-the-disabilities-we-can-t-see

Oh Endometriosis, how do I hate thee?  There are countless ways.  Far too many to list.

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At the moment, I hate that I am still awake (painsomnia) after midnight on a Sunday night / Monday morning, when I have to be up in only a few short hours to start getting ready for another busy work week.
I worked 50 hours last week, and close to the same the week before, and my body is paying the price. I guess I can’t blame you for that, as I already know my limitations.

My hubby and I are going through some intense stress right now due to situations involving lawyers, the broken disability system, and doctors, which probably isn’t helping my pain levels.
I do thank you for staying away (for the most part) during the past few weeks, when I needed the ability to work and focus, especially since my evil ATN decided to morph into what feels like a migraine, in addition to the typical 24/7 pain that it has so generously provided for the past few years.

You also waited until after my Dad’s birthday dinner yesterday, so I was granted the opportunity to enjoy spending a little quality time with my parents.40c8c0662f5904301ba15b170abadcad

You probably know that I needed to work from home this weekend and I would have appreciated you allowing me the opportunity to do that, but I guess I can’t expect you to stay away forever since we are apparently bound for all eternity.

If I could ask of you one favor, it would be for you to ease up enough for me to get at least a little sleep tonight and make it to work tomorrow.

I could not possibly agree more! 🌼 Great post! 🌼

My Brain Hates Me

“In the 18th century, the French philosopher Voltaire said, “Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less, in human beings of which they know nothing….” He also opined that “…it is dangerous to be right on matters on which established authorities are wrong.” If he were alive today, writing a tome on pain medicine, it would be easy to imagine Voltaire describing physicians as people who withhold medications of which they know a great deal, to manage painful conditions of which they have learned even more, in human beings who perceive them as knowing nothing, amidst a regulatory climate that scares the hell out of them.

In the 21st century, it is ironic that although we have made significant advances in our understanding of how pain affects the nervous system and continue to develop innovative treatments, many pain sufferers…

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Depression

This is SO true and definitely hits home for me. Depression, severe anxiety, and panic attacks have taken hold of me again and have haunted nearly every minute of the past month or maybe longer. I used to hide it well, with the help of medication and willpower, but those are both failing right now and those around me have finally noticed. They have noticed a change in my physical appearance too, as I can’t maintain a healthy weight and look dangerously thin and sick. It’s strange when your invisible illnesses become visible. I hope we can all push through the pain to enjoy the holiday weekend. 🌼💜🌼

Balancing Spoons

I like to think that I am a pretty happy person. I do my best to look at the silver lining in all situations. I laugh easily. Sometimes too easily. My jokes are corny. Sometimes I snort when I get to laughing too hard. I’m unbelievably ticklish. But even with all of that I suffer from depression. I hide it. Or I used to. Most people don’t know. That’s the way I liked it. Hidden. There’s a stigma that comes with mental illnesses. One that should not be there. A mental illness is an Illness all the same.

My depression stems from my battle with endometriosis. I take medication for it and it’s generally something I can keep at bay. But sometimes, despite my positive outlook and medication, it creeps up on me. It swallows me into a world of doubt. I start focusing on all that is negative and…

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Is My Invisible Illness Visible?

I almost can’t help but find some twisted amusement, as my invisible illness (the namesake of this blog), seems almost visible these days.

There is no doubt that I have not been myself lately.  As I mentioned in a previous post, I am desperately struggling to function through heightened anxiety, depression, panic attacks, and all around emotional instability.

I seem to have lost all ability to control my emotions, and even worse, my reactions and the words which spew uncontrollably out of my mouth, unfiltered, and without prior thought or regard for my surroundings and others in my presence.  My stress level seems to have taken a toll and my body and mind are doing as they please, despite my constant resistance.

Not only are these changes in my personality visible (and often embarrassingly audible ~ LOL) to those around me, but my appearance has undeniably been going downhill. Continue reading

Wow! I REALLY needed to read this right now. I have been struggling with an all-consuming and suffocating guilt which literally takes my breath away at times. Most of my guilt and regret originate from mistakes that I made years or even decades ago but somehow I have always managed to hurt those I love and cherish the most and no matter how much time passes, the scars in my heart remain. Still even more of those feelings continue to rise out of situations over which I have no control.

My anxiety and depression are at an all-time high and the panic attacks that I managed to control for years have returned with a vengeance.

If I could drill the words of this quote into my heart and mind, perhaps I could over-power and move past the pain which haunts my heart and tortures my mind.

Positive Outlooks Blog

The beauty of life is, while we cannot undo what is done, we can see it, understand it, learn from it and change so that every new moment is spent not in regret, guilt, fear or anger but in wisdom, understanding and love. — Jennifer Edwards

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