You know what pisses me off?

Hunger. And thirst. And having to choose… Do I want to drink a little more today than I did yesterday and then still be hungry? Or do I want to eat something and know I won’t be able to drink the rest of the day?

You know what else pisses me off? Dehydration. And the feeling that if you could stand next to a lake, you would want to drink the whole thing, if you could. And hunger… although the gnawing pain of hunger is slowly starting to not bother me anymore. But the slow and steady dehydration is annoying me to no end.

You know what else pisses me off? Stupid doctors. Not the kind of doctor that makes an honest mistake but is really trying. But the doctor that just doesn’t seem to care.

That is what I have dealt with. I went to the Emergency Room last night because I couldn’t swallow anything anymore. Let me back up and explain something.

When I first burned my esophagus, I could get fluids down my throat. Not as much as before I burned it. I would drink whatever my body weight divided in half. So I weighed 203 pounds. I was drinking 120 ounces of fluid a day. I’m dyslexic… I also like to drink stuff.

After burning my esophagus, I was able to drink 80 ounces but couldn’t eat. I was okay with this, although I really wanted to drink more. Later, I was down to 70 ounces, then 60 ounces. Now, 1 week and 5 days later (or is it 4 days?) I am so thirsty I wish I could drink. The last few days I have been able to drink (in order of days) 30 ounces, 24 ounces, 28 ounces, 20 ounces. I am so thirsty and hungry right now!

Back to yesterday. I was so hungry that I figured I would find the slickest food and eat something. I made hard-boiled eggs because they were the slickest food I had at the moment. I managed to eat a few of those. After that, I swallowed a few sips of blueberry pom juice. And then, I couldn’t swallow anymore. I was taking teaspoon sized sips of water and juice. It got to where my mouth started to feel like cotton. I started taking a sip and just holding it in my mouth because my mouth was so dry it hurt.

I debated on going to the hospital. Since I can’t take my anti-anxiety medication (because I can’t swallow pills) I couldn’t get myself to go. I finally decided to go and go brave enough to actually leave the house. I figured, if nothing else, they would do the skin pinch test and give me a bag of fluids. Right? WRONG!

I went in and explained to the nurse what was wrong. The doctor came in and said there really isn’t much he can do for me. He did give me a GI cocktail. I choked it down. Literally. I choked and gagged on it. It felt like I was swallowing rocks… but at least I was swallowing, right. I waited for it to set in like they did the time before. I figured they would bring something in when it was time to drink, like the last time.

The doctor came in and asked if I drank anything and I said no. He asked why not. Seriously? I told him there was nothing to drink and figured they would bring something when they wanted me to drink. The asshole actually scolded me for not asking for a drink!

The nurse brought in some ice-cold water. And by ice-cold, I mean “felt like razor bladed rolling down my esophagus”. I took one sip. It felt like it sat at the top of my throat for a second and then SLOWLY slid down my esophagus. The doctor asked me to take another drink. I took another sip with the same results. He asked me to take another drink. I did, with the same results. And then they released me with the instructions to drink water. You couldn’t even tell I drank anything from the bottle, that’s how little I managed to swallow. No IV fluids. He said I didn’t LOOK dehydrated. No pinch test. That’s the first thing the Navy doctors always did if you said “I feel dehydrated”. Then they’d run blood work and give you fluids until they were happy with your hydration level.

Here, at Cabinet Peaks Medical Center, I’ll have to be close to death and they probably still won’t do shit for me.

I went home, thirsty as hell, and fell asleep. I woke up this morning thirsty as hell. I’ve managed to force 16 ounces of juice down my throat. It’s starting to close again so I know I will have a few more ounces before I can’t drink anymore. I am hoping to hit 24 ounces before I can’t take anything else.

I try to always be positive, smile through everything, joke and laugh… but this time, I am over the happiness part. I am miserably thirsty. I peed once today about 5 hours ago and I have no need to go for now… or anytime soon. I can pinch the skin on the back of my hand and it slowly goes down but stops while there is still a peak. Out of boredom, I made a mountain ridge across my hand this morning just to see if I could. I can.

But what pisses me off the most is the fact that I know if I need medical care, I am not going to get even the basic care here. And that worries me. Especially now.

They shouldn’t have built a new hospital. They should have built more helicopter pads and just flown people out of here to a hospital that cares just a little bit.

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Feeling More Alive!

I am starting to feel more alive now. I went through my exhausted phase again where I sleep so much I lose track of time. WOW! Is it the END on April??? WTF? Where did my time go? Oh yea, I slept it away.

I really wish a doctor would figure out what the hell this is so I can have a normal life… or at least so that people won’t think I am just being lazy. That would be awesome. Most of my friends know I can’t help it. I love them.

I got two packets of papers to fill out from disability. It took me a week to finish filling them out. Mostly because I had a panic attack when I saw all the questions. And I had to describe what I do all day from the time I get up until I go to bed. I had a nice cry one night while no one was around. It was humbling, to say the least.

Usually, I wear my smile and tell everyone I am doing great. Usually, I try my damnedest to do everything myself. This last week, I came face to face with reality… and I didn’t really like it. My roommate and my oldest son ended up helping me fill out the paperwork because I kept saying “I think I do okay with making food.” Then I got the reply, “Uh-huh. Sure you do. When was the last time you made a full meal like you used to? How long did it take you to make biscuits and gravy?” Yea, that was honest right there, but it makes me feel so low about myself. And if you are wondering… 10 days. It took me 10 days to make biscuits and gravy. Not even kidding!

But, now I wait patiently and see if I actually get on disability or if I can plan on moving into my van. No stress there… at all. *sighs*

AND THEN… Did you know you can burn your esophagus?

Yes, you can! So my youngest son made a pot of chicken (and his chicken is GOOD) and served it on a bed of rice. Oh my my! It looked so good and I hadn’t eaten anything that day because I was hurting so bad I didn’t leave my chair. I mixed the chicken and sauce into the rice, took a spoonful… I should mention that my son makes it “mom-friendly”. The chicken is so tender I don’t have to chew it. A few smashes with the tongue and down it goes. Did I mention it was straight off the pan?

Oh yes, I put straight-off-the-hot-stove food into my mouth. I went to smash it when I realized it was WAY TOO HOT! and I went to spit it out. Instead, I swallowed the flaming hot piece of chicken WHOLE! It burned ALL THE WAY DOWN! I have never felt such pain before. My eyes watered before I started crying. I chased it with ice-cold water and it felt okay. Then I let the food cool before I finished it. I thought all was okay until the next day.

I woke up and it hurt SO BAD to swallow. It felt like my esophagus lining was sloughing off when I ate anything with any amount of viscosity and then getting stuck in my throat. I knew I couldn’t just not eat so I drank juices and ate very soft foods. Baby food sweet potatoes (stage 1) were too thick for me. Don’t kid yourself thinking that juice was any better. I could feel every bit of my esophagus as it ever so slowly slid down my esophagus… like it was peeling it open as it went.

Now, usually, I don’t cry in front of people. I am very proud. I was raised that if you need to have a good cry, do it in your room or the bathroom. But while you are out in public, you hold your head high with dignity and respect. And that day, I totally failed in that aspect. I managed to swallow one teaspoon of food at a time and cried like a baby while doing it.

It was interesting to explain to the emergency room staff. They gave me a GI cocktail to numb my esophagus so I could try to eat baby food. I inhaled the next container of sweet potatoes. I was so hungry I would have eaten the spoon if I thought it wouldn’t hurt.

Now, I have viscous lidocaine to coat my throat. I am up to very mushy foods or anything slick, like avocado. I had hard-boiled eggs today, COLD, and made some mushy rice cereal too.

Don’t get me wrong, I love juice. But a solid week of juices (apple juice, sweet potato pie juice, carrot juice, celery juice) and I will take any mushy food over juice! Well, off to drink my blueberry pom juice.

I’ll try to post more this week.

Too Much Weekend!

Saturday was a busy day. It started out normal, like any other Saturday. Then Curly came over to talk to Marie. Curly mentioned that there was a lady at her house again. I was catching some of what was going on, but not all of it.

Let’s backtrack for a moment: the night before, at about 3 a.m., someone knocked at my door. Not too many people come over at 3 in the morning but I answered it anyway. This lady, we’ll call her Lela, is standing in the hall of my apartment building and looked like she was on something. She asked if Curly was here. I told her she had the wrong apartment. She was so wasted that she couldn’t comprehend what I was saying, then started to get upset, started rubbing her face and said “Sorry, wrong apartment.” I asked who she was looking for and she couldn’t answer that. Then she asked where the next apartment building would be. Really? She was so wasted she couldn’t walk outside and locate a BUILDING! I walked her halfway there and went back home.

Back to Saturday: So Curly wasn’t sure if it was the same lady or if it was someone different. Marie said she would go look and see. I just had this feeling in my gut so I handed my phone to Marie and told her to take it “just in case”. Then I went back to plunging laundry in the bathroom.

Marie and Curly left and after a while, Marie came back carrying Baby G, Curly’s son. My heart sank. I knew something was wrong. I asked what happened. Marie said that Lela choked on lettuce, or something, and they had to call 911. So I run over there.

The scene… the lady choked on a piece of lettuce because she took a handful of pills and chased it with vodka. We aren’t sure if she was trying to kill herself or what. I kicked into “get information/ keep her alert” mode. I sat on the chair and held her hand and asked her a ton of questions. She flat-out lied on a couple of them, but the rest were helpful. The EMT showed up and got her to the ambulance.

Before they left, we told them about the pills and vodka. Curly and Tom also told them that Lela was not allowed to come back.

After they left, we found out she had taken some of Curly’s medicine that she has for a legitimate reason and we also learned that she is homeless and mooched off people a lot.

I went back home to destress and finish the laundry. We were all a little freaked out about it. I was relaxing in my chair after laundry was done and decided to put the new ointment on my feet again. It’s a steroid cream that helps my eczema. I was hoping it would work and my feet would clear up nicely… I am not that lucky though. My feet kept burning and went into a gasping episode. I finally started putting two and two together and called the nurse hotline.

While on the phone with the nurse, she could tell I was having trouble breathing and told me to take my epi-pen. I don’t like to take my epi-pen because I spend so much time second guessing myself. Am I REALLY in need of the epi-pen? Or is it “all in my head”? If I take it, will they just lecture at the hospital or will I be taken care of? Do I really need it or am I just over-reacting?

Ah, the life of the psychologically abused. I tend to never trust myself with my health. Leave a dying woman in my care, I am right there in full crisis mode ready to help! Leave me alone in an acute allergic reaction, I will question and second guess until it turns into a real emergency because I have been conditioned never to trust myself, my instincts, and to doubt everything I think. I need to work on that.

I did call 911 from my son’s phone, and I was on the phone with 911 when the phone decided to reboot on me. Completely disconnected my call. You would be amazed at the response time when you are on the phone with 911 and the phone goes dead while you breathlessly explain that you took an epi-pen dose from allergic reaction. It was SO fast! I tried calling back on my phone but it wouldn’t connect. Or so I thought.

But the ambulance showed up and they got  me loaded into the rig.  Started taking vitals and my phone rang. It was dispatch. I explained that I was the one who called before, my son’s phone disconnected, and I was in the ambulance and was okay. She was pleased to hear that and we hung up.

I spent two hours at the hospital being monitored since I also took Diphenhydramine before they got there. I ended up getting home late at night with all the kids that showed up at the hospital. I think I traumatized poor LeBraun (who watched me shot myself with my epi-pen). And Marie got to the hospital and said “I leave for TEN MINUTES and when I come back there’s an ambulance! TEN MINUTES!” LOL Poor girl, she was a little freaked out.

Leeli is still talking about the IV I had in my arm LMAO! That poor kid. He was so grossed out.

Sunday was a sleep day and a “finish the laundry from yesterday” day. I have to make an appointment for my follow-up now and I have therapy later today. I’ll also see if there is something else I can do for my feet.

But for now, I am off to sleep a little more. I am so tired!