OK, so maybe I am an idiot

I have made almost 2 dozen trips to the bathroom, today. Around 5 PM, I thought it was over. Ha ha ha ha!

I had cabin fever. The garbage and recycling needed to go out. Since I was dressed, I went out to get flower pictures, too. It didn’t take long to realize that was a mistake 😮

I had to hurry home.

I feel even worse. I am burning up. My guts are in wicked bad pain. I have been sitting here, rocking back and forth to try to ease the pain. All parts of my head and neck are swollen. My belly is swollen tight. My tongue is sore and swollen.

The places I have fistulas, I feel stinging. I would cry if I had tears. They aren’t working. It hurts to breathe. My heart is beating wrong. Oooooooohhhhhh, soooooooooooo miserable 😦

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I WAS doing better

The last couple of days I felt much better than I expected. Today I feel awful 😦 My head hurts sooooooooo bad! And I feel very sick to my stomach. My entire abdominal area feels heavy and raw inside. My lungs are in tough shape.

The good news is that my appointment to talk to the surgeon has been moved up a week. I am very anxious to hear his opinion about my guts. I want to have it all explained to me in detail!

I am too sick to go to the park for free food. I can’t deal with going over bumps on the sidewalk. I feel like I would split open.

I look like heck. The color isn’t as vivid in this pic, but the rims around my eyes are very red. My droopy eye doesn’t want to open very far, either. I haven’t been crying. Maybe I should?

Also my teeth hurt pretty darn bad 😦 Above the black spot, the gums are white, swollen out and bleeding. I thought the church was going to pay for a dentist, but nothing has come of that 😦 I have other painful teeth, too. It really sucks that poor, disabled people don’t get dental care in Utah. The homeless people here in SLC get dental care. Maybe I should quit paying my rent?

Ummm….not in a very good mood here, today 😦

 

Are we going to have an earthquake? An alien invasion? What?!?!?

Olive has had a lot to say tonight. She has followed me to every part of the house while meowing loudly and quite determinedly. Each time I look out a window, she does, too. She has been pacing around, looking at the door and at me. I was tired and got in bed. She repeatedly nudged me and meowed like crazy. Olive wouldn’t let me go to sleep. I finally got out and came back to my comfy chair. Olive has taken up a post at the window. Her neck keeps going back and forth, her eyes watching.

Earlier Olive tried out different places to stretch out. I had never seen her lie on the floor! She also tried the couch, the counter, the dresser and the ottoman. She keeps stopping to listen with a weird look on her face . Then she meows and looks out the window. I get the sense she is waiting for something to happen. Olive seems a little miffed that I am not watching and listening.

Pretty soon I am going to try to go to bed again.

I have been tired

Brain tired, body tired. I am glad I know my blood test results. It explains the tiredness, the difficulty thinking, the hard time accomplishing things. Without enough iron or oxygen, I might as well be a sloth.

Have you ever watched a real live sloth? They move really sloooooooow. So slow that they collect algae on them from hanging out in the rainforest. I am fascinated by sloths 🙂

My head hurts. The swollen bumps on the back of my head are humongous. The swollen lymphs and glands on the rest of my head are like little rocks. I can just imagine the war going on in my body to keep me alive and healthy!

Yesterday I slept late. After meds and a meal, I felt well enough to go grocery shopping. I took TRAX to Rancho Market and stocked up on fresh fruits and vegetables. I got 3 big, reusable bags full for $20.37 🙂 Tostados, 4 apricots, 4 nectarines, 4 peaches, 2 plantains, a bunch of bananas, potato bread, sour cream, 2 onions, 2 bunches scallions, 6 avocados, broccoli, a package of bacon and 2 pounds of strawberries. It had been 14 days since I was there last. It’s hard to beat the prices at Rancho!

Of course, that wore me out. Then I talked to neighbors for a bit. I didn’t have enough strength or brain power to write on the blog.

This morning I went out to the recycle bin and saw a commotion. Just a few yards from the property was a bad accident. I didn’t get very good pictures. The dark car had its wheel knocked almost all the way off. The people in both cars were taken away in ambulances 😦

It’s one of those days that I am not doing all that great, but I am not horrible. I am uncomfortable.

While I was out, I got a couple of flower pictures 🙂

Olive says she’s a sloth, too.

Ummmmm, what!?!?!?

I got a bunch of new test results sent to me tonight. There’s a lot more wrong with me than I was told. I have metabolic alkalosis. Apparently it’s a consequence of gastro-intestinal problems. Isn’t this a YIKES!? That causes weakness and the cardiac arrhythmias that were making the monitors to go nuts.

My total venous oxygen is 8.7. Normal is 17 to 24. No wonder I have the symptoms of fatigue, dizziness and mental status change! It’s a miracle my brain cells are working at all!

There are also THREE fistulas on the last CT scan. The one I didn’t know about exactly correlates with the mystery pain near my belly button…maybe even the bleeding? It says it goes from the middle of my transverse colon to my ventral wall hernia. That explains why several doctors spent so much time looking at and poking me there. Why didn’t they tell me? I think one guy did, but I thought he was the one who was confused.

And now I know why the surgeon had to go and stick his finger up my butt 😦 The CT report says I have a rectal tube. Docs asked me if I had one yesterday. I said no, they only stuck a tube in my butt to put in liquid for the CT scan, then they took it out. Oh! The importance of precise wording and the frustration of the same name for things both temporary and permanent!!!

For the fistula to the bladder, they saw air between the fistula and the bladder last week on the CT scan. That’s what got worse and made air come through my bladder yesterday.

There is thickening of the sigmoid colon due to infection.

Again, the report mentioned multilevel disc disease, most severe at L2/L3, with severe discogenic sclerosis.

Considering this and all my other maladies, I think I am doing remarkably well 🙂

I am NOT going to follow instructions!

The ER gave me papers listing when I should return to the ER. I had about half of the things outlined when they turned me loose this morning. One line says to come back if my temperature is 100.4 or higher. Right now it’s 100.7. I feel hotter than that. I have seen way too much of the ER! It’s a great place to go if you’ve been in a traffic accident or broke your leg, but not real helpful for chronic illness. Even their print-outs are stupid. Mine says “Abdominal Pain, Unknown Cause (Female)”. I suppose they don’t have a print-out for fistulas.

For days now I have had a hard time finding ANYTHING that sounds good to eat. At some part of every day, food just looks plain revolting. I was surprised this afternoon when I got a hankering for chocolate. I decided to make one of those chocolate lava mug cakes.

2 TBSP butter
2 oz unsweetened chocolate
4 TBSP sugar
2 TBSP flour
1 egg

Melt butter and chocolate in the microwave for 30 seconds. Stir together. Add remaining ingredients. Stir just barely enough to mix. Spray oil in mug. Add 2 Dove chocolates and slightly poke in. Or add a truffle, or something good and chocolatey 🙂 I microwaved for 1 minute and 22 seconds with my 900 watt microwave. Do NOT cook more than that! I like running a spatula around it and putting the dessert on a plate so I can marvel at the cakey, gooey goodness 🙂 Eat hot.

Well, just as I put that on a plate, 3 women came to my door. Nothing like getting caught in the act! I was so excited that I accidentally got some of the sauce on my nightgown. If they weren’t there, I think I would have licked it off :-p I reluctantly put the plate aside.

Olive is loving all these visitors lately. She has been coming out to see people. Of course one of the women is allergic to cats. Olive didn’t want to pay as much attention to the other two women, she kept petting herself with Marion’s hands and rubbing on her legs. Figures. We were all laughing so hard we were crying. I got out the laser to distract Olive, but she kept going back to Marion!

The 3 woman posse came to ask about my ER trip and health. They kept saying they were worried about me and offered to do anything for me. Awwwwww….

Online I have been getting all sorts of messages saying individuals, prayer circles, get-togethers and temple folks are praying for me. No wonder I felt better today! 🙂 Thank you everybody!

My body feels pretty confused about staying awake for a whole day, then napping for 4 hours in the morning and evening.

Weird weather day! The high was 94 and the wind blew hard. This is the kind of weather that spawns tornados as it goes east. Watch out!

 

Ooooohhhhh …..scary blood test results

These tests were done Friday, then Tuesday.

On May 23rd my hemoglobin was 10.3 on the 27th it was down to 8.5. My red blood cells have plummeted from 4.58 to. 3.13. That means I am losing blood pretty fast. The ER doc informed me the hospital does not like to do blood transfusions for anemia. Just great. No IVIg and no blood.

My white blood cells increased from 9.75 to 12.01. That’s infection.

My venous oxygen was only done on Friday. It was 8.7, which was below normal. There were about as many above or below normal as there were normal results.

I want to go to bed! My head hurts like crazy.

My real life is often stranger than fiction

I just got out of the ER at 4 AM. I have to wait until 5:28 when TRAX starts up again so I can go home. The ER offered me a wheelchair accessible van ride, but not until business hours. So, I am sitting outside watching a lone worker power wash the hospital TRAX station.

I saw a lot of doctors, nurses and EMT’s! I hope I can get this all straight. When the surgeon’s office called, she told me to go to the ER if the pain got worse. I believed her.

We started off with blood tests. Then I had to pee in a cup. The WHOLE time I was there, my BP, heart rate and oxygen saturation kept going too high or low. There were alarms and incessant beeping.

A surgeon came in. He did his best to explain what’s going on. He says it’s really worrisome that the second fistula developed so quickly and now air is going through my bladder. I need to have surgery as soon as possible, BUT, right now is too soon because my intestines are swollen and still healing from the infection. At the rate fistulas are developing, I could end up with more before my intestines heal. He says they are such a mess now that surgery would create even more holes and fistulas than will happen by waiting. He says basically I am between a rock and a hard place. All 4 surgeons that were consulted agree.

All sorts of docs wanted to put me on narcotics for pain. I said no way. They want me to go to a pain clinic to find something that works.

When I cried because I was so mad and frustrated about my guts, a social worker was sent in. He was the highlight of the whole thing. We talked an hour. It was good to have a kind person going over the fact that all choices sucked. Some just sucked less than others. No matter what happens, I am going to have another very long recuperation time and I am going to be even more disabled. He asked if I was interested in counseling. I said sure…I wanted someone as fun and interesting as my Adirondack shrink. He gave me numbers to call.

The last ER doc seemed a bit sadistic. He told the nurse I needed to eat these crackers and drink 2 things of apple juice. She put it in front of me and tears started to roll down my face. Just looking at food made me sick. Smelling it was revolting. I was told the docs needed to see how I did. I commenced sobbing. When the next doc came in, he said I didn’t have to eat or drink.

This time I was smart enough to ask for copies of blood tests. I will look at them later. Now that it’s after 5 AM,
the sky is getting lighter and birds are singing.

I am sure I left out things. It’s been a long day and night and now day.

Cool! The lights came on and the loudspeaker announced the next train. I had better get going!

So glad to see and be on the train!!!

 

 

Back in the ER, again

The pain got overwhelming. People in my support groups telling me to go to the ER right NOW got overwhelming. I got as far as the lobby of my apartment and burst into tears from pain. I fled back to my room. The support group people said quit messing around, call 911. I took TRAX.

I rarely have faith in the ER being helpful, but I am giving them another chance.

Got here and had to pee. I passed gas through my bladder 😮 It stung sooo bad! Now it feels like I have been cut with razor blades in my urinary tract. This whole thing sucks big time.

All the hospital folks have been extremely nice to me. I just keep crying. They are going to do blood tests and send me a surgeon or two to talk to. Each doc wants to give me narcotics. I keep saying no. If my guts turned to cement now, with all that’s going on, I would go insane!

I still have the partially collapsed lungs. The doc said he can’t hear air in the bottoms of my lungs. I told him my abdomen hurts too much to breathe deep…and has for quite awhile now.

I will post updates if anything new and exciting happens.

Unbelievable!

I got a call from the surgeon’s office at 8:30 AM, giving me an appointment 2 weeks from now!!!! I asked her “am I going to die before then?”. She also put me on a cancellation list.

Oh, I feel soooooooo sick! How the heck am I supposed to endure?