I Don't Discuss It, But It's There ::Wince Cringe::

It's a very common misconception that there isn't any pain with Gastroparesis, it's a lie, there is. I've never been in a fight a day in my life, but I'd imagine that it's much like being punched repeatedly in the stomach and then having massive heartburn afterward...something along those lines. There's an almost constant pain in my stomach--too bad it's not from sit ups and I could say I had a massive six pack--and now I also have the pleasure of having acid reflux on top of it. I'm not 80 years old, I shouldn't be having these problems, but such is life. 

Since having Alfred, my Gastric Neurostimulator, implanted a new pain has been introduced into my life. There is an almost constant ache that nags me, sometimes MORE than nags me. Advil, Tylenol, and their cohorts do nothing for it. If I take the heavy duty stuff, I cannot work, but it also slows down stomach motility, something that is already a MAJOR problem for me, so why even bother. Gastroparesis is a gigantic puzzle and a bunch of decisions that have to be made and it often results in you saying "why even bother?!" 

I don't even mention my pain and do the best that I can to not show my pain because I don't want to worry those around me. Not seeing me eat or lacking energy is worrying enough for them, so why add one more thing? Alfred is doing his job, I'm having more good days and less bad days. I just want pain to stop, food to start, and exercise to happen like a normal person. But, then again, I'm not a normal person. 

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. 

The Impact of Social Media

Social media definitely has it's perks--it has its drawbacks too, but for the purpose of this blog, we'll keep it positive. Facebook, Instagram, Blogger, Tumblr, Vine, and other websites allow you to connect with others who are experiencing many of the same things that you are. 

On Facebook you can follow pages or people that pertain to your interests, causes, diseases, etc and learn more about them; meet like-minded people, join in discussions, add your two cents, or have a mini-complain fest. 

On Instagram you get to post pictures chronicling your daily life or inspirational quotes complete with hashtags galore. You can follow people or pages that interest you, whether it be hobbies, illnesses, causes, bands, etc. Think a pictorial blog in mini form. 

With a website like Blogger (or Wordpress) a person--like myself--is able to post their thoughts, experiences, and such on a subject in a website form that anyone can find if they search for it. Making a blog, generally, allows a person to put out information on a subject to create awareness. That is my goal here at Diary of A Gastroparesis Warrior. I want to create awareness for, not only Gastroparesis, but chronic illnesses that I love with in general. 

Personally, I find a lot of comradie through social media that I may not necessarily experience in my day-to-day life. Who do I know in my personal life that has Gastroparesis? Nobody, really. I have met and been befriended by several people who are experiencing the same illness(es) as myself. We can share stories, experiences, and struggles with one another. We can also encourage one another during hard times, cheer during the good times, and laugh during the funny times because we understand what it truly feels like. I know that I can ask questions regarding my gastric neurostimulator--Alfred--and people will share their experience with me and I will do the same. It's nice knowing that I have people that I can go to who have sailed in the same boat. Without social media, I don't think I'd have that. 

Does that mean I won't share or talk to someone who doesn't have Gastroparesis? Absolutely not! I'll talk to anyone who asks me questions! I am an open book to anyone that asks, but YOU have to be the one to ask. 

If you're looking for pages to follow on Facebook, I suggest G-PACT. They post inspirational quotes and pictures from time-to-time, but the majority of their posts are informative and beneficiary blog-style posts. On Instagram I suggest the accounts fightforcat, counting_spoons, ju_spoonie, inspirationalstories_, and searching the hashtags Gastroparesis, chronicillness, gpsucks, and butyoudontlooksick. You'll discover many different stories, many different struggles, many different inspirations, and experience the comraderie that goes on. 

Social media has its place. You can learn so much from those around you who are going through similar experiences as yourself. Reach out to those around you, bond, learn, and help educate as many as you can. 

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!

Alfred and The Flux Capacitor

Yesterday was Alfred's very first adjustment since being implanted. My fabulous surgeon brought with him a senior intern and his charge nurse into the room—with my mom being there, it was a roomful. First he wanted to know how I was feeling—hhmm..loaded question at the moment. I generally tell people that I feel about 70% better than I did before surgery. I still throw up food. I still feel nauseous. I still get bloated. But it is not AS bad as it was before having Alfred. He then asked what I've been eating—hhmm...loaded question again. I try to eat! I get points for that, right?! I explained that my diet primarily consists of protein shakes (JuicePlus) and baby food, to which he said “but do you chew food?!” Well of course I do, but not a whole lot. My mom explained that I eat a few ounces a food a night, but that's about all. Generally, I cook dinner for my family and I eat a child's-size portion—if even that. He seemed happy with that since I was maintaining weight.

Now the interesting part (I think)...

My surgeon laid back the exam table and had me lift up my shirt so that he could see my tummy and then he pulled out his little whizbang machine—think portable ATM machine with a cord attached to a half-dollar-sized gizmo. The little gizmo gets pressed against Alfred by the nurse and then my surgeon and the intern start discussing numbers that are WAY over my head—all dealing with the workings of Alfred—and that's it. I thought I would feel a buzz, a snap, a zip, or zap during this little adjustment, but I felt nothing! My stomach/side are a little tender—probably from the pressing of the gizmo onto Alfred—but other than that, it was a breeze. 

The surgeon and his whizbang tool doing Alfred's adjustment

At the end of the appointment I had to fill out a questionnaire rating the frequency and severity of my nausea, vomiting, bloating, early satiety, epiglottal burning, and epiglottal pain. The last two were head scratchers for me as to what they meant, but I figured it out (think heartburn) and was able to fill out the questionnaire. The only one that really got a bad rating was the early satiety because Alfred really has no bearing on that—I blink in the general direction of food and I'm full. Once I turned in that bad boy, I was done! Alfred's next adjustment is in two months! It's such an interesting process...very interesting!

When the Bed Bug Doesn't Bite

I was raised not to hate, but I HATE insomnia with a passion! It's an inanimate not-even-an-object, so I'm allowed to hate it, right? I think so. It really stinks being awake at all hours of the night—in this case it's 11:40pm, early for some—not knowing whether or not you'll be able to fall asleep. The illusive sleep could be for various reasons:

1. a mind that won't shut off
2. medication (new, old, or wrong)
3. pain (otherwise known as painsomnia)
4. too much sleep during the day
5. too much activity during the day
6. [enter your own reason here]

There are SO many methods one can try to help themselves slip away into Sleepytime Never Neverland

1. Prayer (I'm a big supporter of this)
2. Music (I also support this one)
3. White noise (I use this as well...floor fan AND ambient sound maker)
4. 
   Count sheep (I prefer to imagine sheep jumping over a fence) 
5. Think happy thoughts
6. [Enter your own method here]

What do you do if you just CANNOT get yourself to sleep? Obviously I am finding myself in that conundrum right now as I am typing this little ditty in—what is for me—the middle of the night. You make the best out of the situation! If nothing else, through my life with Gastroparesis, I have found that you just have to make the best out of everything or else you'll go bonkers and—if you knew me AT ALL—I'm bonkers anyway! So, after having knocked back some Gaviscon for my heartburn and a little something for the nausea, here are some suggestions on how to entertain yourself QUIETLY in the middle of the night::

1. Read your Bible
2. Reread your favorite book series
3. Start reading a new book (I started reading Unbroken)
4. Start a blog (I know it's a little bit obvious, but I had to say it)
5. Write in a diary/journal/smash book
6. Color in a coloring book
7. Listen to music on your iPod (discman's are passe, right?)
8. Write a snailmail letter to a friend (you might surprise someone!)
9. Entertain yourself on Pinterest
10. Entertain yourself on Instagram
11. Create an Awareness Page on Facebook (I'm semi-considering doing this myself)
12. Make a To-Do List
13. Go through the photos on your phone and delete old ones that you don't like
14. Check your emails and reply to them
15. Watch videos on YouTube (through earphones, of course)

Naturally, there is SO much more that you can do, those are just 15 examples to get you started! Insomnia really is the pits, but sometimes it causes the creative juices to flow so you just have to take the good with the bad and make it shine!

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!

Batman Isn't the Only One Who Has His Alfred—I've Got One Too!

It's been 46 days since I've had Alfred put in—such an important anniversary—and life had been interesting, better, the same, and different, all wrapped up into one. I never went into the gastric neurostimulator surgery thinking that my life would be back to normal. I never went into it thinking that I would get better—there is no such thing with Gastroparesis. I went into it hoping for relief and you know what? I've gotten some. By no stretch of the imagination is it perfect. There have been a couple of days within those 46 where I just wanted to curl up and die...but did you notice that I only said “a couple”? It used to be pretty much every day.

I still find myself not all that interested in food—which I knew Alfred wouldn't help—and struggling to eat the food in front of me. The game of eenie meenie miney mo between water and food is fought every day because, if I drink too much, then I won't eat. If I eat, then I won't drink...so I have to try and find that balance. Here's a hint:: I haven't found it quite yet. I have mastered the art of the hip-hitch when I sit—no, I'm not tooting—otherwise, Alfred pokes me in the hip or the ribs. My surgeon said that there's only a small space between my ribs and hip so they found the best place possible and that's where they put the “pocket” that Alfred sits in. I know that it's just going to take time to get used to, so pardon the way I'm sitting.

Slowly I've made connections to when I've had my bad days, like after playing tennis—yes, tennis—at work with my student, playing football with him—yes, football—and holding little babies and passing them back and forth and to and fro. I'm discovering that I haven't quite recovered enough to do that...just yet. I'm wanting Alfred to launch me into the Olympics or something when I need to stop and wait for him to just get me through lunch! Small steps.

Maybe that should be my motto: Small steps...but I think I'll go with.................... ba na na na na BATMAN!