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)

Age and Chronic Illness

Chronic illness hit me like a tons of bricks just as I was turning 30...literally. It was within days of my 30^th birthday that the migraines, vertigo, and the symptoms of

Gastroparesis hit. Most people that I speak to say “you're awfully young to be experiencing all of these health problems”. I would have to say that I wholeheartedly agree with them; however, I would agree with them whether I was 20 years old or 65 years old! There is no “perfect age” to be saddled with a chronic illness.

There is this thought amongst the majority of people—and that's conjecture on my part—that chronic illness, particularly serious ones, are things that are supposed to only happen to the elderly. It's almost like Chronic Illness is like getting your license, like a morbid milestone of life. It's one that I will GLADLY pass up. Senior citizens have lived long lives, they've experienced things; therefore, the natural progression is then to have illness to occur. It sounds horribly morbid, but, I think that's how most people think life is SUPPOSED to work, whether we say it out loud or not. Sadly, Chronic Illness has no prescribed age that it begins with.

It is estimated that 133 million Americans has a chronic illness, sixty percent of which are between the ages of 18 and 64. These are not including people with cancer, mental illness, or diabetes. My particular disease, Gastroparesis, has an average onset of 34 years of age—though it can occur at any age. I also suffer from chronic migraines. Migraines are usually experienced, originally, in adolescence first and then carried on into adult life; and women have a greater risk of experiencing migraines than men.

Chronic illness has no age discrimination...

Chronic illness will touch your life when it wants to. It pays no mind to your age, to your plans for your life, or how much you will it to go away; it just comes in like a thief and alters your thoughts about everything. It rearranges your thoughts about yourself (you're stronger than you realize, trust me), your thoughts about your friends, your thoughts about your future, the healthcare system, everything! There will be times when you become overwhelmed and want to give up, but you can't! There will be times when you become frustrated with your doctors and the healthcare system and want to throw in the towel, but you can't! There will be MANY times that you hear—well intentioned, but ignorant—statements from friends and family that make you want to scream, but you have to just soldier on.

Advocacy is key in the case of Invisible Chronic Illness(es). Help people understand what it's like living in your shoes...take away the mystic...the stigma...help give your illness a voice! The younger generation can use their tech savvy-ness to their advantage and spread awareness for the disease(s) that they have. Instead of being “whoa as me” turn it into “support me”! Turn peoples' pity into a sense of pride in all that you've accomplished despite not feeling well!

Guaranteed, One Hundred Percent Authentic

I am 100% authentic when it comes to my life with Chronic Illnesses. It is not in search for sympathy, fame, pity, or advice from those around me or in the great big universe; but to spread awareness for the diseases that I have. I have been chosen--I suppose you could say--to live this life with diseases that are not only pretty uncommon, but pretty miserable to live with. 

I believe that God has chosen me, as He has chosen the many other people out there who live with Chronic Illnesses, because we are strong. We are fighters. We are warriors. And, like Katy Perry says:: "...I am a champion and you're gonna hear me roar."

So prepare to now hear me roar...

It saddens and angers me when I see people accusing individuals who legitimately have Chronic Illnesses of faking their disease or faking their experiences. Certainly there are folks out there who DO fake being sick and they need help and, in their own way, are ill themselves. However, they cause a myriad of issues for those of us who battle, struggle, and fight for our lives and our wellness each and every day. They are the ones who make you scratch your head and wonder "why would you want this life?"

Now, not only do we have to struggle with our family, friends, co-workers, bosses, and doctors' doubt that we are sick, but now we have to deal with individuals attacking us on social media all because we are sharing our journeys. Sharing them for awareness, sharing them to help the newly diagnosed, sharing them for more national funding, sharing them for support. 

And then evil happens...

Personally, I have not been attacked or questioned on the validity of my Gastroparesis, Peripheral Neuropathy, (mild) POTS, Chronic Migraines, Chronic Vertigo, and IBS. The worst that has happened to me is that someone didn't like how I sited something on a blog I posted and said I was, basically, a copycat. However, almost daily, I see friends on Instagram and Facebook being attacked or talked about by individuals questioning the validity of their illness or events they've experienced. 

I have seen people accuse girls of faking Cystic Fibrosis when they CLEARLY have breathing treatments daily and CLEARLY have breathing difficulties. I see people accuse a young lady of not only NOT truly having actually miscarried early in pregnancy, but not having the painful illnesses that can sometimes happen afterward. How can you DO that to someone?!?! I've seen people going after someone with Gastroparesis that is tube fed and making statements about her being fake or an attention seeker. 

Why crush the butterfly when it's down..?

When you accuse a Chronically Ill person of being an attention seeker or out to obtain money or question their illness at all, it's like  crushing a beautiful butterfly when it's already down. Why break--something beautiful--when it's already down? It just makes you a coward. You can hide behind your computer or your phone with your anonymous name or fake account all you want, but we all know the truth that lives inside of us and what we go through daily. 

My suggestion is this:: instead of attacking, do research. If you think someone is an imposter, research them. Cross reference their facts on their disease(es). Cross reference their pictures--trust me, pictures get stollen.  Instead of being nasty and making baseless statements, check out what you know first and then make an informed move after that. 

The Chronic Illness community sticks together, so we will, one way or another, always see if another Warrior is being talked poorly about. I commend all of those Warriors who have boldly stood up for those who have been talked about, beaten down, and doubted. I pray for those who feel the need to fake an illness to try and join the Chronic Illness/Spoonie Community, it's not one you want to join. And I also pray for those who attack us Broken Beautiful Butterflies. We know the value of our lives and the expense of our illness(es), we don't need to waste time and energy on you. Take your negativity elsewhere. Finally, to the caregivers, family, and friends who support a Chronic Illness Warrior, may you be blessed and happy in all that you do! 

A Dash of Vertigo With A Pinch of Migraine

Imagine sitting at work in an elementary school grading work and you can't make out the writing because it's blurry, that was me in 2010. Right before (like a week) my Gastroparesis started came chronic vertigo and chronic migraines—go big or go home, baby! I ended up in urgent care because I couldn't see straight and couldn't stand up. Naturally, what do the doctors do? Had me lay down, sit up, turn my head, everything you DON'T want to do when you have vertigo. It was a nightmare! I was sent home with scapolamine patches—I think they thought I wanted to go on a cruise—and they called it a night. The patches didn't work, so within days I was in my doctor's office looking for relief. What I got was Dramamine—more seasick remedies. That didn't work either. The interesting thing about my vertigo was that I felt like I was on a conveyor belt. The ceiling and the floor looked like they were moving like something you would see in a factory...no spinning...no whirling...it was Conveyor Belt City for me. That totally threw the doctors for a loop. Not to mention I didn't have ringing in the ears. If I had these symptoms they would have known that it was Meniere's Disease. Another possibility was Benign Paroxysmal Positional Vertigo (BPPV), however, I don't have crackling in my ears, so that ruled it out.

Since I was a conundrum wrapped in an enigma tied in a zebra striped bow, I was sent off to physical therapy. While this was VERY interesting therapy, by this time, I was suffering from REALLY bad vitamin B deficiency from the not-yet diagnosed Gastroparesis, so I was walking with a cane AND walking with vertigo on a floor that looked like a conveyor belt. Therapy was not fun, it was not easy, and it got me nowhere. I saw no improvement from it, so it was terminated. Eventually I was sent off to LA to see if I qualified for a trial (or something) for a little thing called Mal de DebarkmentSyndrome—say THAT ten times fast. However, I didn't feel as though I was on a boat, it wasn't a swaying motion, it was a CONVEYOR BELT, very different, so I didn't qualify and back home I went to just deal with it.

With the vertigo kind of a head-scratcher, the doctors moved on to the migraines. MRIs were clear—YAY--showing that it wasn't a tumor and it wasn't MS (since I was walking strange from the Vitamin B deficiency they thought it was a possibility). The Topomax seemed to be working, but my neurologist just was so flummoxed by what I was experiencing, so it was off to UCLA to see a migraine specialist.

What. A. Waste. Of. Time.

What I gleaned from the specialist was that there are no such things as sinus headaches—I beg to differ, my face has wanted to fall off from the pressure of the snot in my sinus', but whatever, Sir. I have “a migraine syndrome”--so specific in his diagnosis he was! He had me bump up the amount of Topomax I was taking in a day. And I got to pay $250 for that! But I'm not bitter, no I'm not! It took a couple of weeks, but the increased Topomax seemed to actually have an affect on my vertigo as well as my migraines—or maybe it was just my determination to get out there and beat all of this stuff, who knows. I went from barely being able to make it to the end of my driveway to going up my street (it's less than ¼ mile long) to going around the corner to going around the country block. I saw the doctor at UCLA on Valentine's Day 2011 and I went back to work in April 2011—how 'bout them apples!

In the years since returning to work I have had bouts of vertigo that have lasted several days to several weeks for no explainable reason. I just do my best to work through it and make sure that people around me know that they may have to catch me if I do an unexplained pirouette walking down the hall. My migraines, like the vertigo, are just as transient and just as strange. Unlike most migraine sufferers, I do not have light, sound, or smell sensitivity, nor do I have auras; so you wouldn't really ever know that I'm having a migraine unless I told you. I call myself a Functional Migrainer—remember that I coined that phrase when it goes viral. Only when the pain gets too intense do I have to give up and go lie down. About two years ago I was prescribed Imitrex to take for acute migraine attacks and that seems to help, but Excedrin Migraine isn't too shabby either.

Thankfully I don't encounter migraines nor vertigo very often, but when I do, I have my handy-dandy Imitrex or Excedrin Migraine with me!