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!

Vertigo...POTS...But There Aren't Any Pans

Last week was my appointment with the ENT (Ear, Nose, and Throat) doctor to find out the story behind my vertigo. My surgeon figured that I had Ménière's Disease (a disorder of the inner ear that causes spontaneous episodes of vertigo along with fluctuating hearing loss, ringing in the ear, and sometimes a feeling of fullness or pressure in your ear.)--something that had been ruled out years ago. Another thought was Benign Paroxysmal Positional Vertigo (the sudden sensation that you're spinning or that the inside of your head is spinning)--something else that had been ruled out years ago. Or it could just be plain ol' fashioned vertigo. It was just a matter of getting the ENT's opinion. 

After explaining to the doctor that there are no hearing changes--she used her little device that rings and she checked if I could tell where sounds were coming from--telling her about my fluctuating blood pressure (two weeks prior, within twenty minutes I had two appointments, my blood pressure went from 120/75 to 95/75. Normal numbers, but a significant drop), having her lie me back and tilting my head from side to side and watching for the reaction of my eyes, and then sitting up and tracking my eyes. She looked in my ears and declared them "beautiful" and that my vertigo-like symptoms are not from my ears, but sounds more like something related to my blood pressure, something postural, like something called Postural Orthostatic Tachycardia Syndrome (POTS). 

With this new suspicion comes mere doctors and new tests--YAY! The ENT says that I need to most likely have a tilt table test to see how my body reacts to the changes in location and all that. If it is POTS, then my blood pressure and heart rate will be all over the place--at least that's my understanding. If it is POTS, I don't think that there's anything they can do for me. It's just one more thing on the list of strange illnesses Christine has. While my blood pressure is still, technically, considered normal, it's weird that it fluctuates so much. 

I don't understand why I have these strange illnesses that cannot be cured, cannot really be treated, but can only be monitored. But I don't have to understand it. If it try to, I'll go crazy. The only thing I have to know or understand is that God's got this. He's got a purpose, a reason behind it and I've just got to trust in Him. It's difficult sometimes--no lie--but He'll get me through. 

Gettin'...Physical...Physical!

It's no secret that I'm no Jane Fonda or, to bring it into more current terms, The Rock, John Cena, Vin Diesel...you get the picture...but I do the best that I can to exercise every day—or frequently, whichever happens first. Naturally, I don't do spinning classes, WOD (not that I even KNOW what that is!), CrossFit, or anything exceedingly vigorous; however, I do jump on my elliptical machine anywhere from 15-20 minutes when I feel like I can. Most of the time, though, I do stuff off of Pinterest. I've turned my iPhone into a veritable smorgasbord of exercises! Mostly they consist of stability ball routines, light weight training, yoga, and Pilates.

Unlike a traditional exerciser, I don't plow right through a routine for 45 minutes or an hour or MORE, I pick my way, taking breaks when I need to—as opposed to passing out—for a stitched together routine that adds up to...sometimes 30 minutes...sometimes 20 minutes...and, some days, only 15 minutes. I try and make sure that I do at least one exercise per region of the body if I am just having A DAY. If I am feeling wild and crazy, then I do a lot more per region. In general, squat variations, sit-up variations, and various arm curls are the norm—and then I wonder why I cannot walk or lift anything the next day!

I love trying new things and I love using my stability ball—mostly because it makes me feel like I'm a professional body builder or something—but I discovered recently that lying on my belly across the ball with my hands on the floor in front of me to raise my legs up behind me (I believe it's called a Reverse Hip Raise and it works your tooshie) isn't Alfred friendly. I seriously thought I had ripped open some stitches! So, with some adjustments, I was able to do the exercise—it's one of my favorites.

No matter what your circumstance, try and get up and move, even if it's just a little bit. I started out with Pilates—it's pretty gentle, so I suggest that. Do what YOU can and don't try and keep up with anyone else because the most important thing is that you're up and moving!

So Your Weekend Got Ruined...What's A Gal To Do?

It's all fine and dandy to make plans. It's a whole different ball game when your body decides that you're not going to be able to follow through on them. That was the case for me this past weekend. I had hoped to look at some lyrics of the band Leeland to prepare myself for an upcoming performance at my church. You see, I am a volunteer interpreter for the Deaf at my church, Harvest Christian Fellowship, but have not been able to participate since having Alfred implanted. This past Sunday was going to be my first time back in the saddle—so to speak—since surgery. My body, however, had different things in mind. Saturday, instead, was spent in bed with earphones in listening to Michael Buble—man, his voice is like buttuh...just soothes the soul!

I thought I was coming down with a cold...sneezes...runny nose...but my chronic vertigo was in full swing and THAT'S what was giving me the most trouble. Honestly, I thought it was because I was coming down with a cold. I got myself together by Saturday evening to go out to Orange County—home of Disneyland and Knott's Berry Farm—to have dinner with my brother for his birthday and then it was right back into my Pjs. Dramamine and I had become best friends by that point in the hopes that I would be able to make it to church the next morning and DEFINITELY the next night so that I would be able to interpret for Leeland...

4:45am and I'm STILL dizzy!

The Dramamine didn't help me—maybe it did for an hour—and now I'm tired on top of feeling dizzy and cold-ish. What's a gal to do?! I made tea...it's the logical thing to do! With some more Dramamine and a little cold medicine on board, it was back to bed for me! I was SO bummed that I wasn't going to make it to interpret for Leeland at church, but what use would I be if I'm tipping over?!?! As it turned out, I was having a private Michael Buble concert in my bedroom...on my iPod---the cheapest concert ever.

I have learned that I have to accept things as they come with my body. I cannot control the ups and the downs that it wants to take, so I just have to go with the flow. Sure, it's frustrating and I just wish there was a Cure-All shot or pill that I could take so that I could get on with life uninhibited, but that's not the way that it is. Instead I have to just pop in a little Michael Buble or classical or heavy metal and wait for the episode to pass. It kind of stinks that it has to be that way, but at least for now I have the best—and cheapest—seats for a Michael Buble concert!

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!