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 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. 

So I've Been Diagnosed With Fibromyalgia

I went to the doctor this morning--an early Christmas present to myself--because I've been experiencing the worst joint and muscle pains known to man. There have been mornings where I didn't know if I would be able to get out of bed. Every possible joint in my body, including the itty-bitty ones in my toes and fingers hurt.  It's quite flabbergasting. 

This past weekend was the last straw. 

I had a photoshoot with my dog at a nearby train museum and I had a hard time keeping up. By the end of the afternoon I had such a hard time coping with the pain that I wanted to cry. But that's life sometimes, right?

Not with this pain. It feels like someone is SHOVING their thumbs into my joint sockets and twisting. It feels like an elephant is standing on my femur. It feels like my blood has been replaced with lava from a volcano. It feels like my hands and feet are on fire. It's inhumane. 

The doctor diagnosed me as having fibromyalgia this morning. Yay, one more diagnosis. One more incurable disease. One more disease whose only treatment are pills that I cannot really take because of my gastroparesis. 

Being chronically ill...it sucks. Really badly. 

Now, with this new diagnosis of fibromyalgia I hurt, all of the time, which sucks because I am a touchy feely person. I love to hug people. I love getting hugs. But it hurts. I don't want people to stop and I don't want to stop hugging people. 

The chronic illness life...it changes you.