Musings of A Girl In Pain At 1AM

It's 1:30AM here in Southern California and I'm lying in my bed "wide awake" because everything burns and hurts. Every joint. Every muscle. EVERYTHING hurts. My jawbone and teeth ache. My hands burn as if someone is trying to set them on fire. The pain is uncanny! Even my poor little pinky toe...poor little fella! 

I do not, that I know of, have fibromyalgia. Friends have asked if its a possibility and I just say:: No, I'm getting old and I don't eat! Lack of basic nutrition will make you she in places that you didn't know we're possible of even aching--like your hair. 

In the last 3 weeks my Gastroparesis has been at 100%+ and food is a definite enemy. My mantra has been "Food Is Not Your Friend", but of course it is and it's just my cranky stomach telling me otherwise. I LOVE food and I love to eat and cook it, but right now, I want nothing to do with it. It makes me physically ill, I barf it up, we are not friends. Because of this I haven't eaten much more than handfuls of crackers at a time (last night I ate some mac & cheese!) and have lost at least 7 pounds as a result. 

On Wednesday I saw my surgeon, Dr. Marrujo, thinking he would probably turn my gastric neurostimulator Alfred back on, he didn't. He said, because it seems to not really have done much, if anything for me, and I'm doing so poorly now, I am at a crossroads as to what to do next. He suggested seeing a Dr. Lim and trying Domperidone, but I've tried that before and had no success. I was honest and said:: I don't often cry about my situation but I cried last week. Im tired. Im tired of being sick. Im sick of being tired. I just don't want to do this anymore. I don't know if I qualify for getting tunes and I don't know if that's what I'm asking for but I'm just done. He questioned what I meant by "tubes" and I said:: for hydration...for food...for something. I'm just done. I just want to go to sleep and wake up not feeling like this. 

I'm thinking he might have thought I'd lost my marbles there for a minute. 

Anyway, he changed my as-needed pain medicine from Tylenol with Codeine to Norco to see how that goes and had me do blood work and is going to see me in two weeks. In true Spoonie fashion my blood work came back normal--I can see the results online--and here I sit, aching like I've gone 76 rounds with Mike Tyson. 

I KNOW that I'm lucky that I can function as well as I do, but I can feel it slowly disappearing as the days and weeks go by. Maybe what I need is a break from work, which is soon coming. Summer break starts in a week. But, at the same time, I have no idea what I REALLY need--besides a LOT of prayer. It's all so frustrating. It's all very tiring. I just want the pain and the nausea to stop. I want to go to sleep and wake up refreshed in the morning. 

That's not too much to ask for, right?

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.