Whacky weather

Today was 71 degrees. Wednesday, Thursday and Friday this week show snow in the forecast. I wish I felt well enough to go out today! Yesterday I left for maybe 5 minutes to take pics of that van. I hardly ever go outside except to take out garbage…and I am overdue on that. Still 60 degrees at 8 PM 🙂

As I type this, there’s a Halloween Party going on in the community room. Nope, can’t go to it. I am too busy going to the bathroom and back. I woke up feeling OK….until the second I stood up. That’s a trend lately. I don’t know the mechanics behind it, but something bad happens to my abdominal contents when I stand. Let’s call it mass chaos. It hurts so bad that I think of calling 911, but so far the intenseness tones down after awhile.

This is my second morning of peeing pink. Not sure how scared I should be. I see the doc next week.

I spent most of the day dreaming about escaping Utah 🙂

My head hurts real bad. STOP!!!!!! Hard to think or hold a thought.

 

For you, maybe…

There’s a political commercial for Mayor Becker that helps me realize his priorities and understanding. Art, theater, food, music…some woman in the campaign ad says SLC is a real city because it has these things.

Instead of housing the homeless, like they pretend to do, on paper…..Ralph’s thing was to build yet another theater that people like me sure can’t afford to go to.

Thursday it was announced that a new fancy hotel is going up near it.

You know what’s absolutely disgusting? There is sales tax on food in Utah. And now there’s a proposition on the ballot to add more sales tax. The city parks around here are worn out and neglected. For years the public transportation group called UTA gave obscene bonuses for people who work there, yet kept bus and train service minimal. They spent their money developing properties they bought up along the train routes. Proposition One…I get to pay even more of my puny income in taxes so rich people can go to the theater? Hmmmmmmmm…….if it was to house the homeless, I would gladly pay even more. There are thousands of homeless people in SLC, despite the hype. Such BS!!!!! Look how many of the “chronic homeless” were supposedly off the streets each year. I wonder how many actually just moved or died???

Utah gives humongous tax breaks to developers. They’re even going to tear down a prison just so the land can be developed. It’s pretty disgusting that regular folks are propping up the people who already have millions….and more. But Medicaid expansion? No way!!!! That’s wasting money 😦 We all know profits and theaters are more important than people. Thoroughly disgusting.

You know what? I feel like crap. It has been a tough day physically with fever and chills. At first my female bleeding looked fluorescent pink. Now it’s bright red with clots and pelvic pain 😦 Yup….that’s because it’s a weekend! Not good when I have already had a hysterectomy. I believe it’s related to the cystocele. I am not convinced that my endometriosis has disappeared, either. I even found other people talking about that. Because I am fat, I still have more estrogen than I should. Sigh….

Must. Keep. Mind. Off. Pain!!!!!!!!

What a bum!

I stayed awake a couple of hours this morning, then went back to bed for more than 4 hours. I felt wicked bad sick 😦 Woke up feeling better, but that didn’t last long. Seems that the MG, hernias and pelvic floor collapse all sort of become one thing. Ugh. Queasy, weak, tired of pain!

I have not even touched the medical paperwork today. My eyes are too blurry for reading from paper. I can just barely read the lit computer screen. Ever since WNV, reading books is tough.

I feel very flu-y again. This never ends. I used to blame it on lupus…now also WNV. My skin is creepy, I am alternately freezing and burning up. Temps in the 30’s tonight. I turned on the heater for the first time this season. Cough, cough….choke, choke. I hate the part when dust has to burn off and blow through.

Yesterday the 2 vans and the SUV with creeptoids finally all left the parking lot! Did the manager kick them out? Were they fleeing cold weather? Whatever it is, I hope that’s the end of it. I am soooooooooo tired of parking lot noise and drama.

Significant snow in the mountains, but only light rain here in the valley. My feet are getting itchier by the day! I miss seeing new things and going new places….

Today I am keeping notes!

I am trying to read all the medical records. I am going to add stuff here that I want to remember.

2/24/15 ES 1-2 Emergent     https://en.wikipedia.org/wiki/Emergency_Severity_Index

Wolff–Parkinson–White syndrome….the only time people ever mention this is in ambulances or the ER. Here it is again. Of course the internet says it’s “very rare”   http://emedicine.medscape.com/article/159222-clinical#b3

IVCD-L…..Interventricular Conduction Delay….my heart does weird things on the left side

NSSTT abnormal….my heart does more weird things

My condition is listed as good, fair, critical and guarded on different pages. I found this on a page of hospital humor….

• Fair: The patient is on a government medical care program that will not pay anywhere close to what we want to bill the patient, but we took an oath in medical school to take this paltry sum in exchange for that large perma-sealed diploma on our office wall.

guarded, which probably should only be used on soap operas

2nd day in hospital….“remarkable for mild dysarthria, which has improved since yesterday.”  I want to say no shit, Sherlock, you gave me solumedrol and IVIg!!!!!!!!

Reflexes are absent in the lower extrenities and 1+ upper extremities. Shows diminished sense to light touch in the legs…..the neurologist claims it’s from CIDP

Lots of pages show low anion gap and low albumin…..means I am a sickie

What the heck is a PSAT? Besides a PSA test for the prostate (in men only) or the pre-SAT test for college? Whatever it is, I am 8 and normal is 12-50 :-p

Iron 27….normal 37-170

For years, Hgb, Hct, anion gap, MCH, MCHC, MPV are too low and RDW is too high. My lymphs are too low at 17.7. Normal is 45.5-75.5.

Microcytic, hypochromic anemia    http://www.rainbow.coop/library/causes-of-anemia-especially-microcytic-hypochromic-anemias/

AChR blocking antibodies 24  normal is 0-25…..but it’s the closest I have ever been to being positive for MG with a blood test. My MG is considered seronegative.

My ECG‘s don’t look like the nice, repetitive beats you see on TV. They are all over, up and down, smooth and jittery. It says “cannot rule out anterior infarct” and abnormal ECG. Well…I am still here 🙂

A scary one is 6 respirations/minute 😮

Those bastards!!!! They cranked up the infusion rate to 500 when I fell asleep. No wonder I had the IVIg killer headache that required a wet cloth over the eyes and earplugs. From then on, they infused at 100!

After I complained about things, they sent in a social worker who said I was experiencing ineffective coping, difficulty sleeping (DUH….the air bed sounded like a jet engine), plus anxiety and emotional issues related to the disease process. Another duh….I was stuck in Utah, fighting for my life because they kept denying IVIg until I was in ICU! Then the nurses tried to give me 180 mg of regular Mestinon all at once….instead of a Timespan. Several times they missed doses of Mestinon and wanted to “make it up” by giving doses closer together. They obviously have NO understanding of MG/Mestinon!!!!!!! If I had not been alert and aware, they could have killed me 😦

Nurse after nurse wrote down that I was pale, but flushed….yup, that’s anemia and lupus. I turn very red under fluorescent lights. They finally put in my chart to turn the lights off unless needed.

One jerky nurse said my dysarthria only happens when I am upset at her. Ohhhhhhhh……if only! She was a bitch. It’s not a good combo for me to be incarcerated and ordered around, on high doses of steroids, with lots of med mistakes. Grrrrrrr……I can still feel that same anger just thinking about her. Most nurses were nice….but that one was a total dud.

That got me worked up. Lots more to read, but I have had enough for the day.

My back is getting the same sort of swollen and sore that happened last year around this time. Then after that, my hip went nuts a year ago. Last night I noticed that my left hip is very touchy….again. I cannot stand up more than a couple of minutes without excruciating pain 😦 I am also light headed, weak and feel sick. I wonder what’s happening this time?

And the stupid hernia just keeps getting worse. You probably don’t want to hear the grossness.

Sad tonight

I was watching a program about building homes for veterans while reading MG emails. I started crying. I am constantly reminded that I don’t fit in any category. I don’t have just myasthenia gravis, I have all sorts of chronic problems. I can’t talk about the MCTD or the hernia in the same place I talk about MG.

When I was in high school, I took the ASVAB….Armed Services Vocational Aptitude Battery. I had never taken a test like that before and knew nothing about it. I got something like 99%. Branches of the military started calling and sending recruiters. Ah ha ha ha ha….the site says “Scoring high on the ASVAB will require study and concentration. Don’t skimp on preparing for this test. It’s your future. Get the most out of it.” Study? Really???? I also took another test that qualified me for a 4 year scholarship from the armed forces. THEN I went to a nearby Air Force Base and promptly flunked the physical. Well….I tried!

Kind of like me taking the SAT and ACT for colleges. Who knew there were weeks long preparation sessions for such things? I just went and took the tests….and got great rankings…so strange colleges wrote and offered me scholarships. I got accepted at both of my forestry college choices and went to the one farthest from where I grew up.

It sucks that I got diagnosed with one thing after another while in college. The armed services were right. At 18 it was RA and asthma and a heart murmur. From then on, more were piled on yearly.

Today I got a box of my Utah medical records. I have only been here 3 years! This is just a fraction of what has been generated in 3 years 😦 It’s 2.6 miles from the law center to my house. It cost them $17.90 to send the medical records to me.

The two fat files are hospitalizations in 2 hospital systems. Then there were other piles from doctors. I haven’t read much yet, but it’s crazy just how many blood tests, CT scans, MRI’s etc, that are abnormal 😦 I got majorly bummed out reading what I did. I never knew my CRP was 60. Normal is 0-3. That’s when I was having the killer left hip/back pain. CRP is a measure of inflammation.

Well, as I go through this mountain of paperwork, I will have plenty to be sad and shocked about. Sigh….

I don’t feel well. Maybe the tree pollen isn’t helping? Another box of tissues bit the dust today.

Best post I have read in “forever”

Suelo is better at explaining how I think than I am.

http://zerocurrency.blogspot.com/2015/10/persecution-complex-wealth-and-religion.html

Not really “here”

It’s after noon and I remember very little. Last night was awful. I woke up every hour or less to pee. My bladder doesn’t like being squished. I also had drenching night sweats. Each time I woke up, I had to peel myself out of the soaked bed 😦 It’s REALLY nasty to put the cold, wet CPAP headgear back on each time I get back in bed…..then lie down on the cold, wet sheet. Yuck. And I had dreams full of stress that wore me out. Sigh….

The parking lot has turned into a flophouse for homeless people. The van woman now has 2 boyfriends in the parking lot and one upstairs. And she no longer lives here…..but is ALWAYS here…. all night and most of the day. Things like this never end well. Someone is going to get hurt. Apparently there is no end of drama inside and outside for these people. I am tired of them waking me up. If I nap in the day, they are screaming. At night there is lots of door sliding and slamming. Time for the manager to quit being wishy washy about this situation! Grrrrrrrr…..

I guess the theme for today is exhaustion. The hernia and prolapse pain dogs me day and night….and so do the homeless boyfriends. Time for the idiots to find someplace else to hang out. I don’t know what to do about me. I am soooooooooooooo tired!

Hernia hell

This has been a very painful day. For days now, the hernia has been getting worse AND my bladder has been trying to fall out. More than a year ago, the GYN said my cystocele and rectocele were at the worst grade. Well, now they’re worse.

There was a very hard, flat spot just under my incision, across the bottom of my belly. Now that patch is delaminating. Just in a few days, it had gotten wicked painful. The top layer of flesh seems to be no longer attached to underlying structures. What has been wood hard skin is now puffy and squishy. Something bad is happening 😦

I can now feel my bladder falling out 24/7. It hurts and stings. It affects how easy it is to pee and how often I have to go. This afternoon it hurt so bad that I took a nap to escape it.

Just to pass gas, let alone poop, I have to lift up my hernia to the far right at the bottom, then press it in. It’s way bigger than a football there. This never happened before. I had been noticing that part of me sounded like a sack of gurgling fluids. I am thinking something is being cut off there from where it goes through the fascia.

I have seen surgeons, I keep getting CT scans. There seems to be nothing that can be done. No wonder the GYN cried. Now it’s way worse 😦

 

I have a very clean apartment

Today was yet another inspection day. We were warned about it multiple times. At first I wasn’t going to do anything special, but this morning I did a quick vacuum and mop so I felt like a good tenant :-p I keep my apartment neat 90-something percent of the time. Every time I get up for any reason, every day, I also do little bits of cleaning. That means the place is fairly tidy no matter what.

After all that, the manager came in, sat down and talked for half an hour…..no inspecting whatsoever. Mostly we talked about Heather, Fletcher and Porter 🙂 Fletcher always likes seeing Joe in his office. They have a thing going on.

Since I was dressed for apartment inpection, I went out when I saw the mailman leave, got my mail, talked to people and then went over to the Asian market that’s a block away. I needed more sweet chili sauce! I got a package of frozen onion parathas. I made one right away when I got home. Mmmmmmmmmm…..

After cleaning, talking and shopping, I am sooooooooo tired! I might go nap pretty soon. I feel like I am burning up, but I am cold to the touch…and I keep getting chills. I guess I overdid it today. I hardly did anything, but that’s too much. Sigh….

Peculiarly OK

Hmmmmmmm…..only light night sweats and minimal pain. Was I still alive? I got up and there was no excruciating pain. What was going on? Even my morning commute back and forth and back and forth to the bathroom was less stressful. I washed my hair in preparation for getting a haircut. Still OK. I gathered my shopping bags and grocery list…and was not SOB!!!!

I toodled out to the parking lot, put on my sunglasses and started down the road. I felt like someone who had just been let out of jail. I was surprised I was free! Got to the first block and had a strong feeling I should go to DI. I hadn’t been there in more than a month! I found a kid book and a cookbook, then looked around. I could not believe what I was seeing! On the shelf, for $15, was a Cuisinart Electric Pressure Cooker. Wow!

I kept a similar one on my wishlist for months. Then I decided to give up. I put things on my wishlist, figure they are too much to wish for, and take them down regularly. Well…..I got my wish 🙂 And I felt more independent doing it. How cool is that??? Then I came back to my apartment and put the cooker on the counter. I figured by then I would give up, but I was still OK!

What a beautiful fall day 🙂 The air was crisp, but not cold. The sun was shining, but not strong. My first stop was to get my hair cut. I had not done that for more than 2 months. My ususal hairdresser was surprised that my voice worked so well. Me, too! She said I looked healthier than usual.

Next I went to Trader Joe’s. I bought a few things uncharacteristic of me. I decided life is too short to just eat the burned peas. (inside joke) I got a Pumpkin Panettone and some clam chowder, among other things. Then I went over to Smith’s for a gallon of milk…..and took off for home.

I had no sooner gotten the food put away and my counselor showed up exactly on time! I almost fainted :-p  I was standing in the kitchen looking at my cooker. I don’t think he ever sees me standing. I am a lot bigger than him 🙂 I also showed him my hernia in the standing position. He wanted to know if I had a tumor. It’s REALLY big 😮

I told him that just a few days ago, I wondered if I had clinical depression. He told me I had to be depressed for 3 months straight like that, so no. He also said in all the time I have known him, he had never heard my voice work so well. Hmmmmmm…..three people in a week said that about my voice. Good trend! Mostly we talked politics, Utah Mormon foibles and socio-economic issues. I always get the impression he’s glad to talk about that stuff with me.

I had gone all day with no food and it was 4 PM. I heated up clam chowder and had it with lavosh bread. Later tonight I had 2 slices of the pumpkin panettone. Not bad 🙂

About half an hour after eating, the gut distress started. As I often suspect, it’s eating that makes me sicker. Lots of rumbling in there and I can feel it bubbling since my intestines are right against my skin. It sure was fun to have a minimally painful day and a working voice 🙂