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. 

It's Not the Flu! I have A PACEMAKER In My Stomach!

Tonight, (December 20, 2014), I found myself in urgent care battling the increasing pain that I have been fighting for a couple of days, lack of sleep, and vomiting--what would Gastroparesis be without the vomiting. When I arrived at Kaiser--yes, I have Kaiser and I actually like them...normally--I told the receptionist that I have Gastroparesis and a gastric neurostimulator and I don't feel good. When he asked what my symptoms were I said "pain...my whole belly and up my side. And vomiting. I haven't kept anything down." For cornsake, sunshine, I'm carrying a bright red barf bowl!

Then I got called back and did all my vitals (103/64 and 74! That's the best they've been in a while!) and then put into a room. I had my mom recline me on the exam table because it hurts so much to sit up--that was an adventure--and then the doctor came. After asking me, initially, what was going on, he addressed my mom from then on out. Sorry, but am I not the patient?! Am I not the one sick?! Later I told my mom, "maybe I looked too far gone or something and he felt he could only talk to you", but I don't think that was the case. He asked me, "so what do you want to do?"

"Well, SIR, make the PAIN and VOMITING go away!" Is what springs into my mind!

So he gave me a shot in my bum of morphine and Zofran. I continued to dry heave because, by that time, I had nothing more to upchuck. So he gave another shot of zofran. In the course of waiting to make sure I don't react to it, we hear a doctor and at least one nurse outside my door having a conversation::

Doctor:: I have two patients with abdominal pain. 

Nurse:: Well, it seems nobody wants to work right now. 

😳😳😳😡😡😡😳😳😳😡😡😡

I replied, rather loudly--though I doubt they heard me:: I'm sorry the fact that we are sick is bothering you!

😡😤😡😤😡😤😡😤😡😤😡😤

No person in their right mind asks to be sick. No person in their EVERLOVING mind asks to have a chronic illness. We are not there, particularly someone with a chronic illness such as myself, because we want to see their faces, disrupt their day, etc. I realize that nursing and being a physician is a job like any other, but you are dealing with SICK people! We don't need to hear bullpucky like that!

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Shortly after that my nurse came in and announced I was leaving and I was packaged up into a wheelchair and sent home. The ENTIRE ride I felt SO nauseous and in pain. I managed to eat a fruit strawberry Popsicle when we got home just so I had SOMETHING in my stomach. My mom figures that if I'm no better or worse tomorrow, we'll find our way back over there. 

Tonight, I think I encountered a nurse and a doctor who neither knew what Gastroparesis not a gastric neurostimulator was. And because of that, I was lumped into the general population when it comes to abdominal pain and vomiting. It wasn't fair, though it's hardly the first time nor the last, that I've experienced it.

Education, people. I'm not asking for experts in urgent care or the ER, but a basic running knowledge and some respect would be nice. 

It's 1AM...

It's 1AM, what are you doing? Probably sleeping, lucky you. I've been awake for hours in intense pain in my abdomen, something I've been feeling increasingly for the last couple of days. And then, at the stroke of midnight--what is it with that magical hour--I started throwing up. Fabulous. I only had some peanut butter for dinner at 6pm and here it is, 6 hours later, and I'm urping it up like Linda Blair. Superb. 

I broke down and woke my mom up because I didn't know what to do. I'm in pain-- I had actually taken a Tylenol with codeine around 9pm--and then I had gone and ralphed, so I felt like I was in a conundrum:: can I take another? It hasn't been past the prescribed 4-6 hours though. I'm hurting bad, but the first one didn't even really help. So I wake her up and promptly have to go upchuck again. Splendid. She looks for a heating pad and can't find it and opts for one of those lavender-migraine-neck-wrap deals. When she put it on my stomach I burst into tears. Outstanding. I'm on a role tonight...eeerr...this morning. 

I've had a cold for almost two weeks now and I wonder if I've coughed, sneezed, or blown something out of place. Or maybe I've just irritated something. All I know is that it hurts to sit up, breathe, laugh, cough, or walk. Colds suck...Gastroparesis sucks even worse. 

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.