A Reflection On My Gastroparesis Diagnosis

Looking back to 2010, I can't believe that 6 years of my life have already gone by living with, not only Gastroparesis, but getting diagnosed with chronic vertigo and migraines in the same year, peripheral neuropathy in 2013, postural orthostatic tachycardia syndrome at the beginning of 2015 and fibromyalgia at the end. It feels as though any time my feet lead me over the threshold of a doctor's office I'm given yet another diagnosis or, at the very least, the prospect of yet another one coming down the line. 

(April 2010--Doctors still didn't know what was wrong with me)

I was just barely turning 30 years old when I became ill out of the clear blue sky. My life as I knew it, working with learning handicapped children by day  and interpreting for the Deaf by night came to a screeching halt and the couch and my body became one. Nurses, doctors, and specialists didn't know what to make of my triad of symptoms that happened all at once--vertigo, migraines, and vomiting. Try as they might to connect one to the other, they just WEREN'T connected. Test after test brought no answers until, finally, I was given a gastric emptying test...It gave everyone the answer::

Gastroparesis. 

Even though my life had been changed for six months prior to that, it seemed permanently sealed now that I had a name attached to what was going on. 

Gastroparesis. 

There's permanency in knowing what your disease is called. There's no turning back. There's no take backs. There's no do overs. It's only moving forward. But that doesn't mean there's a solution. And there hasn't been for me, it's just been the addition of more conditions that, as best the doctors can tell, are as a result of Gastroparesis. 

(September 2010--I had finally been diagnosed with Gastroparesis but was doing no better in terms of treatment being offered)

It would be easy to slip into Permanent Pity Party mode because of the events of the last 6 years. Trust me, a good cry and whine session happens every once and a while and then I go about my business. But taking up permanent residence in self-pity, self-loathing, or anger at others does not improve the situation. I find that a good sense of humor has helped get me through quite well. 

Luckily, after a time I was able to return to my day job, though no medication or therapy was helping my Gastroparesis. Different solutions have been tried, including the gastric neurostimulator--which recently failed, but I've been able to fight my way back to some kind of normalcy as much as possible each time. 

Hold out hope even when there doesn't feel like there is any. Even when the doctors don't know what to do for you and friends and family don't know what to say. Hold out hope that maybe, just maybe, tomorrow you could turn the corner and it'll be a better day. 

(April 2015-Loving with the gastric neurostimulator for over a year and having been diagnosed with POTS and peripheral neuropathy)

The Beauty of Spoonie Friends

Friendship is very important for people throughout life. You learn to share, to grow, to love, to laugh, and to have adventure with friends differently than you do with your family. Your friends help cultivate in you a side of yourself that your parents and your siblings aren't able to. Maybe it's because family is always there. Maybe it's because they have those same traits as you. Whatever the case may be, friends bring out a different side of you than family does. 

The same can be said for Spoonie Friends. These are beautiful, special, and unique friendships that bring out a different side of you. That speak to a part of your life that not everyone understands. It's a friendship built on shared experiences and pain. But it's one that you would not give up for the world. 

I have been lucky enough to make three good friends recently within the Spoonie Community. They're friendship during the good and the bad times helps keep a smile on my face when all I really want to do is cry. While we may or may not share the same disease(s), we share some of the same experiences:: social stigmas, lost friends/family, lost jobs, feeling of worthlessness, the desire to achieve goals, lack of understanding from medical professionals, and the list goes on. Just by being able to be there for each other via text--they all live all over the U.S--we're able to support each other, make each other laugh, and give each other ideas when we just feel too sick to use common sense. 

Spoonie friends can relate to having tubes shoved down their noses and PICC lines put in their arms and being forced to take handfuls of medications twice a day (or more). It's a friendship founded on a negative subject but, because we're survivors, we're able to turn it into something beautiful. Who else can text someone they've never actually met and talk about throwing up or having bathroom accidents? SPOONIES! Who else can you drunk text (medicated on morphine) at 2am while you're in the hospital and have the text make NO SENSE and have them just say "You're medicated, aren't you?" SPOONIES!

Everyone, whether you're part of the Chronic Illness Community (Spoonie) or not, needs friendship. You need that someone or someones that you KNOW that you can count on to be there, even through text, when you're having a bad day. Im lucky enough to have found three beautiful ladies who understand what I'm going through and are there to support me as much as they can. I hope that all Spoonies can find someone too. 

The Article I Wish I Had Read When First Diagnosed With Gastroparesis

Like any person newly diagnosed with a disease, back in 2010 I instantly headed to the computer looking for answers. What I was met with was a lot of clinical and sterilized papers written by the world of academia. I found them to be cold and written with no thought of the patient who might be seeking out, not only answers specific to what Gastroparesis is, but what life is going to be like living with it. 

The article I WOULD like to have read would have gone something like this:

Gastroparesis, also known as delayed gastric emptying, is not an easy disease to live with. Every waking, and sometimes sleeping, moment the patient is going to feel the WORST kind of nausea they have felt in their entire life and it will never really and truly go away. Doctors will give them anti-nausea medications (zofran and phenergan), but their assistance is so short lived that the Gastroparetic patient often wonders why they were even given it in the first place.

The newly diagnosed patient needs to keep in mind that, though doctors have gone through extensive training, they're not the Fount of Knowledge. The patient will come to realize that doctors don't know everything, particularly when it comes to Gastroparesis, and they will encounter many frustrations when it comes to their physicians. Advocacy for themselves, research of the disease, and asking for second or third or fourth opinions will help in finding the Gastroparetic patient the help they need. 

Most, but not all, Gastroparesis patients vomit everything or nearly-everything up that they eat. This causes the Gastroparetic individual to suffer from periods of dehydration, malnourishment, and exhaustion. The Gastroparesis sufferer also experiences early satiety, the feeling of fullness after just a few bites of food. They may go out to lunch or dinner with their  friends and family and watch as they scarf down heaping piles of food as they push food around on their plate--or in a bowl--because they're already full three bites into the dish. 

Unfortunately there's a great deal of pain associated with Gastroparesis. It often feels as though there's an elephant sitting squarely on the patient's belly and they can't get it to move. Then there's the frequent trapped gas bubbles that makes one feel as though they're having a heart attack. They need to rest assured that they are not, it's just gas stuck in their GI track. 

Gastroparesis sufferers struggle a lot in their private lives because of the general nature of the illness. Friends and family do not understand what a Gastroparetic goes through on a daily basis just to survive, the unbearable fatigue that accompanies it, and the inevitable secondary disease(s)--it's sad, but true--that eventually pop up. The loss of friendships and family members is unavoidable in most circumstances and the patient feels left to fight this battle alone or to seek out others that are fighting the same one. 

In the end, whether friendships are lost or gained, whether doctors understand or not, the Gastroparesis patient needs to learn to become their own best advocate. From this battle, the patient will learn that they are stronger then they ever thought and will find within themselves a warrior that they never knew that they possessed. 

Being armed with information about what life with Gastroparesis will be like realistically would have been far more beneficial than clinical, textbook facts. Realizing that doctors aren't as knowledgeable about things as one thinks is one more weapon in a patient's arsenal. Preparedness in every manner possible will help someone navigate the tumultuous waters of Gastroparesis.