OTHER STUFF

It Could Be You...

words: #ysuWords and GP Sufferers

August is Gastroparesis Awareness month and getting the mainstream public to look at lesser-known illnesses has never been more difficult since the start of the pandemic.

So we're putting together pieces from then so their voices have a chance to still be heard, their struggles seen…

Because since the start of COVID, the mainstream world should have learned one thing the Illness and PWD community has been trying to get Able society to grasp for years - and that is...

...It could be YOU.

#ttdJustNo

I had a viral infection

and was sick for

a week.

Couldn’t eat, sleep,

leave my house...

I lived with my head in a bucket 24 hours

a day for four months.

In 2017, we put together an editorial special about Gastroparesis for youseeus.org. Working with sufferers from other groups, running email interview, working with contributing GP authors and lots of research from across the internet has all left the writing team with information left unpublished for four years.

Unfortunately, we no longer have access to the digital versions of all our research, but we do still have a lot printed on paper (easier to read for the PWD, sometimes…). So we can’t provide the source of the words you’re about to read, but if anyone recognises them, please tell us where they came from, we can add the proper credit (words@thetribediaries.org).

We have sprinkled some editing the comments, just to shorten some and focus on the most significant information for this page and make them easier to read.

In the meantime, make the most of horrible lessons learned by others (so you can value what you have

now), about how you don’t have to be born with medical conditions like Gastroparesis.

This illness doesn’t care who you are, what you look like or where you come from.

It can even be caused by a virus, and one short week can be all it takes to go from having a normal stomach to not being able to eat…

The

#gpTribe Talk

'My Gastroparesis was due to [a] Nissen surgery procedure…My life would have been better with the Acid Reflux. It is

now ruined, and I have no good days; all smiles are gone from my life.'

I had blood clots in the legs and then later to the heart. I believe something from this condition, or medication that I was taking or I’m on now, is the cause of my Gastroparesis. I had no problems before the clots.

My Gastroparesis started a couple of months after having a laparoscopy [;keyhole' surgery, through a small incision] and hysteroscopy to address Endometriosis and other reproductive diseases. I also have a Hiatal Hernia and GERD [Gastroesphogeal Reflux Disease]…

A few weeks ago I had a second abdominal surgery and my GP flared up.

I didn’t know I had to tell the surgeon so they could use different medications and anaesthesia.*

I was told the anaesthesia, stress of surgery, trauma to [my] colon and bowel due to removal of Endometriosis and pain medication were the root of the new worsening.

*The surgeon should have had enough knowledge of their patient’s medical history to have known to use different drugs – or at least to have known to double-check that the usual drugs would or would not worsen the patient’s medical condition and status- #ysuWords

I only developed Gastroparesis after surgery for a Hiatus Hernia. In fact, my stomach had herniated into my chest cavity.

I suffer every single day and life is awful.

I had a very traumatic experience when

I was 12 and I had a hard time

dealing with it.

This experience caused me a lot of stress

in coping with it, and I think that’s what

led to my Gastroparesis.

My Gastroparesis seems to be Idiopathic (no found cause). I’ve had IBS (Irritable Bowel Syndrome) and stomach problems for many years, such as mild nausea and [early] fullness.

Gastroparesis is a critical disorder. Every part of your health is effected by this disorder.

I have lived with it for years having lost part of my stomach and part of both upper and

lower intestines.

I was diagnosed with Gastroparesis about three years after they took out my Gall Bladder, and then a hysterectomy…I have lost everything because of this disease. I’m tired of it and tired of being mistreated by hospitals.

I had a viral infection and was sick for a week. After the sickness went away,

I had stomach ache that led to vomiting – lots of vomiting. I threw-up or gagged every 30 seconds for four months. Every 30 seconds! I could not eat, sleep, watch TV, leave my house or anything. I lived with my head in a bucket 24 hours a day, seven days a week for four months…I really thought I was dying.

Minds And Lives On The Line

These words were written before the planet became infected. Since the pandemic, life for CEV people trying to survive conditions like Gastroparesis, have seen their battle to live become even harder. It’s difficult to live in bodies that do not work as they should.

Watching life and time slip by while the Able world continue pushing boundaries in terms of behaviours that are killing CEV people makes life even harder – physically, mentally and emotionally.

When it is already harder than most Able-bodied people can possibly imagine.

But the Able among you can try to empathise. Learning about our plights, sharing our stories with #WeSeeYou[official] and helping us all be seen on social media is one effortless way to help every person trying to get through this unprecedented, deadly situation.

The pandemic is not ‘just’ about people dying of a new virus. It’s also about people being injured by the new virus and its variants. We are seeing an increase in so-called ‘Long COVID’ patients, who have had their bodies and lives suddenly change in awful ways.

Keep your eyes on this website and youseeus.org because #ysuWords are working on pieces focusing on this new Community of sufferers…