Update--May 2016

April Showers did not bring May flowers for me...sadly. I've been in a rough patch lately, as many Chronically Ill people experience. Upon release from the hospital on March 11, 2016 I never really bounced back. The regimen of 3-4 Boost/Ensure a day was too much for me to handle and became less and less as the days passed until it became nearly nothing. And then hospitalization. 

Again. 

Nobody WANTS to be hospitalized, but sometimes you get a feeling that the hospital is the only place you should be. On April 22nd, that's what happened. My General Practioner decided the hospital was best and in I went. Two days in, the NG tube was placed. Two days after that, the PICC line. Clearly my situation was not improving. 

And this would be the strangest hospitalization I've ever had. 

From the time I got sick in 2010 I was given phenergan to help combat nausea and vomiting. It's always helped better than zofran and I've NEVER had trouble with it. This hospital visit, that would all change. Almost from the first time I was given it this hospital visit, I would begin to feel as though I needed to stretch but, no matter how much I stretched or which way I moved, the feeling never left. Then I would get itchy and fidgety. It was making me crazy! So they gave me Benadryl...the feeling left. The next night, it happened again, so they gave me Benadryl again...and Xanax. And the feeling left again. When my PICC line was placed, the dance continued...flush, phenergan, Benadryl, flush....I CANT BREATHE!! I grabbed my nurse so quick!! The rapid response team was called. An oxygen mask was placed. Ativan was pushed (apparently they thought I was having a panic attack or something. I wasn't. I promise you that.) I finally could breathe again. 

I am now listed as ALLERGY:: Phenergan 

To add to the oddity of the stay, though not terribly surprising, my blood pressure never broke 100. My baseline is 92/53. My blood pressure was 84/45, 73/35, and the like while in the hospital. Nobody had any answers for as to WHY my blood pressure was acting this way, so it still remains an unsolved mystery. 

Thankfully, after eleven days, I made it home, albeit with a PICC line and needing to use TPN, but home nonetheless. The veins on my left hand/arm are shot from either IV sticks or potassium and phenergan use, so the poor phlebotomists have their work cut out for them every time they draw blood--which is twice a week at this point. My arm looks like hamburger and feels like it's been run over, but with three heat packs and a few sticks, it MIGHT give a little blood. 

I'm hoping for the best in the coming months. My UCLA visit got moved to June 14th with the colleague of the original Doctor I was referred to see. So hopefully that goes well. I'll keep you posted. I don't know what I'm expecting when I go, but I'm going!

Turned Down For What?! It's Shocking

Today was the "big" appointment with my surgeon, Dr. Marujjo, and the representative from Enterra, the company that makes Alfred, my Gastric Neurostimulator. Going into an appointment like that is like going into the original appointment, you just don't know what to expect, so you try to go in with a blank mind--not hard to do, I'm blond--open mind! I meant, open mind!

First of all, I was COMPLETELY distracted by the fact that the Enterra rep looked uncannily like John Legend, but that is really NOT pertinent to the story, I just had to share that little tidbit. He was very friendly and nice! 

On to the juicy stuff (that's not that juicy)...

Dr. Marujjo and Mr. Enterra (I can't remember his name) asked me where I've been experiencing the shocking at, so, as per usual when in that office, I lifted up my shirt. I explained to them that, like today, I experience shocks where my stomach (the organ) is, but I also experience shocks below my ribs right above where Alfred is. It doesn't HURT, it is just incredibly disruptive. 

I was then asked if there is a specific activity that causes the shocking to occur? I explained that I can be sitting, standing, or sleeping and it will start up. My stomach is nondiscriminatory about everything! 

Together, Dr. Marujjo and Mr. Enterra used the whizbang machine that's used every time I go in to check the settings and determined that it was best to lower the gigahertz, zapahertz, wowitreallyhertz...all the numbers that are discussed is Greek to me, so I just nod and smile and wait for it to be over. I know that Alfred was turned down. 

I worry about the shocking stopping. I worry about the nausea getting even worse than it already is now that Alfred has been turned down. It didn't dawn on me to ask whether or not Alfred might be defective, but I go in again in two weeks, so we shall see how things are going during that time. 

So, I guess time will only tell...

I'm Just...Tired

I stay pretty positive most of the time, but even in my positivity I can be honest and say:: I'm tired. I'm sick and tired of being sick and tired. I'm tired of throwing up all of the time. I'm tired of being TIRED all of the time. I'm tired of putting on a facade all of the time. I'm tired of the pain. 

I'm just tired...

For once I would like to go to bed, sleep through the night, and wake up refreshed in the morning. For once, I would like to eat something, even something SMALL, and not feel pain and nauseous afterward. For once, I would like for my stomach to not hurt twenty-four hours a day. 

For once, I would just like to have a break...

I don't want to worry about what I'm putting in my mouth any more. I just want to eat something because I like it. I don't want to worry about going out and doing something with friends. I just want to go out and have fun. I don't want to worry about taking medications every day. I just want to get up and go. 

I just want to have fun...

I'm tired of frequently missing out on serving at church. I'm tired of missing out on parties. I'm tired of having to tell people "no" when they ask me to do things with them. I'm tired of sleeping through weekends. 

I'm tired of occasionally missing out on life...

Even though I am tired, even though I am sick, even though I feel this weariness I just cannot give up. If I give up, Gastroparesis wins and I can't let that happen. I met shed a tear, I might grouse, and grumble but I need to fight through this tiredness and pain and fatigue like the warrior God has made me!  

The Weight-ing Game

Before I became ill with Gastroparesis I weighed 289lbs. I was fat, but I was FAB-U-LOUS! I knew that I needed to lose weight, I figured that my weight issues bothered other people—because MY weight problem is always the problem for ANOTHER person, you know. However, my philosophy on that was: there are 359 other degrees for you to look if my fat behind bothers you! Now that I am living with Gastroparesis, I have to watch my weight for a whole different reason. In just two days I can drop five pounds—some girls are probably cheering for that one—and that is SO not healthy for me (or anyone!).

Due to the symptoms I experience—nausea, vomiting, early satiety, lack of appetite—eating is a struggle for me, thus comes the weight loss. I find myself struggling to eat most days and then there are those rare, but beautiful days, where I want to eat everything I see (and pay for it later). In either case, I have to remind myself to eat KNOWING that I have this disease. Eat knowing that I have to keep my body going. Eat knowing that I can't really drop weight or I'll have doctors “screaming” at me (they don't actually scream, they just politely, yet firmly tell me not to lose any more weight). Eat to keep my blood pressure up. Eat to keep my dwindling energy level going.

So, what does one do? I don't have an honest answer...

I don't know that ANY Gastroparetic can really tell you that there's a right way to eat for this disease. You have to find the way that works for you. This disease is SO complex and SO understudied, we're grappling along with it just as much as the doctors are. One minute you're being told to follow the Diabetic Diet and then the next minute that's being yanked and you're being told to do something else...it's all just so...confusing! And it's scary at times because at every turn you have suggestions and cure-alls and voodoo magic and holistic oils being shoved in your face and it's just overwhelming!

Don't give up..!

I am willing to try and am still looking into things to keep my nutrition going. I think starting out a Chubby Bunny is what has saved me in the long run. I wasn't ashamed then for being fat and I'm not ashamed to look back and know that I was because I think that's what has saved me.

Currently I use Juice Plus as a main source of nutrition—particularly when I am not feeling the best—as well as putting fruit into the NutriBullet and making a smoothie. My doctors hound me about eating “chew food”, so I make sure that I eat “chew food” too, but I don't have that much interest in it, to be completely honest. A lot of the time I only eat to make my parents and friends happy. “Chew Food” (as in solid food) hurts my stomach, so I stick to soft food when I eat it...soups, rice, mashed potatoes, etc.

Don't EVER take food for granted. Don't EVER take your body and its ability to do its natural functions for granted either. I look back on my life pre-Gastroparesis and I just think about how easy I had it, so little worry. Now, it's not that simple. I don't stress myself out about stuff, but I have to be mindful.

...And Then I Ended Up in the Emergency Room...Again

Everyone has to start off the New Year with a bang somehow, I just chose to do it by going to the ER! Yay! The pain that I had been experiencing from the kidney infection from 2 weeks ago had never really gone away and by last night (January 4), I felt like I was dying a miserable death. I hadn't really been eating--not that I ever really do--and what I had managed to consume was just coming right back up. Laying on my left side was torturous and felt like a puss sack or something was pushing toward the midline...graphic, I know. 

When we got home from church yesterday, I tried to take a nap, but it just wasn't happening. I told my mom that I thought I needed to pay the emergency room another visit. In an effort to save $100, we looked to see if I could make an appointment with my primary doctor and there was nothing available. I even looked for something over the next week and a half...nothing. So I bundled up and off we went. 

Luckily, this time, they took me right back and got me going. My vitals were a little high, for me, (125/75 and 79) and put me into a bed. I was put into an area with multiple beds and a security guard--should I have taken that as a hint--and asked to change. I was then asked for a urine sample [insert grumbling and grousing here]. The nurse started an IV and drew a TON of blood, like 8 viles worth, and then the wait was on for the doctor. 

When he came he told me he had looked at my history as far back as 2010 and had seen that I had "some stomach emptying issues" and wanted to know what was going on. I told him about having Gastroparesis and the gastric neurostimulator, that at first I thought that Alfred--my pacemaker--was helping 70% but now I feel I'm eating my words. I think he's only helped an eensie bit. He asked if I've had pain PRIOR to getting Alfred and I said "yes, there's pain associated with Gastroparesis. It's like stomach cramps with the flu ALL the time. This pain that I'm having now is different." He was very receptive and friendly, examined me and found nothing wrong. Based on his exam and past scans and the results of my blood, it turned out not to be my kidneys--yay--so he treated me symptomatically. 

The nurse came and hooked up a bag of fluids, gave me a shot of phenergan--that sucker hurt--and did a piggyback of a pain medication that I can neither spell nor pronounce--it turned out to be the first and only IV Tylenol there is. I was checked up on a while later by the doctor and still in pain, so he gave me morphine and that helped more--definitely made me sleepy--and sent me home. 

By the time I got home I was pretty out of it, but at least feeling a little better--not so nauseous. Hopefully, come Wednesday, my primary doctor will be able to figure out or have an idea as to what is causing that pain. 

It's hard deciding whether or not to go to the ER. On the one hand, you pretty much know that the only thing that's going to happen is fluids, nausea/vomiting meds, and pain medication and you wonder if it's worth spending $100 on that. But on the other hand, you just want the nonsense to stop so $100 doesn't seem like all that much. Oh, the conundrums we face in Gastroparesisland.