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 Girl With Gastroparesis and the Emergency Room

Making the decision to go to the ER is a difficult one for someone with a chronic illness. You already know that there's not going to be much that the doctor's can do for you, but, at the same time, you want someone to help you. 

That was the case with me last night. 

But being in as much pain as I was in, I just couldn't bare it any more...so in I went. I had my blankie, my hoodie, everything I needed to be as comfortable as possible in that cold environment. 

When the doctor came in he said he had looked over my chart and said that my last gastric emptying study had been "iffy", whatever that means. Whenever the doctors bring up the study they each say something different. This time it was "iffy". I wish they would come to a consensus about it. The he asked me what was going on and for how long. When I explained I had been in indescribable pain for several days he said "the ER is not for chronic conditions it's for when your stomach is bursting open."

Thanks, Doc. 

He also said "I don't care if you're a cop, a doctor, a priest, or Mother Teresa, do you use marajuana, cocaine, or meth?"...uh, no. I've never been asked that before, so that was an odd and interesting interaction. 

He, like most others--until they meet me--have never heard of the GASTRIC pacemaker, so I schooled him on the Gastric Pacemaker and it's purpose. His ears perked up then and he became fairly interested in what was going on then

He did some tests...blood, an x-ray...gave me some medicine and when it all came back normal--as usual--he sent me on my way home.

Just once I would like for a doctor in the ER or urgent care to act like they give two rips about me even though I'm a chronically ill patient. We see SO many doctors and have SO many tests and SO many procedures, why on EARTH would we want to go to the emergency room unless we have to??! A little dignity and respect would be awesome to experience when going in rather than being lectured.