Today the chromebook came and I signed up for internet access. Xfinity will do the installation on Saturday. I am online thanks to an Xfinity hot spot. Pretty nifty! I have a learning curve with this device, but it’s easy so far. I just need to relearn some of my computer skills and learn the peculiarities of this system. Thought I would say that and publish to see how it works.
We had balmy weather most of the fall. Today the wind chill, even here in Salt Lake, is around 20 below zero. On the TV, it shows hurricane force winds with blowing snow and semis blown around the road only a few miles from here. So…..it could be worse.
It’s a good thing I like my apartment cool. I got up at 7 AM, turned on the heat, and nothing happened. I leave the heat off all night because the oxygen concentrator puts out so much warmth. At 8 AM I figured my heater was broken, so went to find the manager. At first he said it was the computer board, then the igniter, then the thermostat. He is calling for a corporate fix-it guy to come deal with it. I guess I will postpone my shower until later. Brrrrr…..
So, I came out to the computer room for warmth. Hi! What’s new with everybody else? Are you having fun?
I should have my new internet device soon. It’s called a chromebook. I have been fascinated reading about them. They are fairly cheap and it will weigh around 3 pounds. It comes with one terabyte of storage in the cloud. It automatically updates the operating system and also the virus protection. It’s NOT Windows 🙂 It’s Google. This is more like what computers should have been like all along. It sounds fairly foolproof. My neighbors are ALWAYS complaining about their Windows computers messing up.
Soooooo…..I look forward to an apartment with heat and a way to get on the internet 🙂 Without a smart phone, my next hurdle is to find a cheap but decent digital camera. I mostly take pics of flowers, the cat and me. It doesn’t need to be fancy. Any recommendations? I loved my old Olympus camera. What’s good and cheap nowadays? Studying up on phones, tablets, laptops, cameras and internet providers makes me realize how far behind the times I have gotten. I am one of those old people, living in a senior apartment building and the world is going by REALLY fast!
You have GOT TO listen to this! Well, not really, but I did.
Utah seems to be the leading edge in docs who find it easier to dole out a psychiatric diagnosis, rather than treat myasthenia gravis. There is a woman I met in July that is going through the same nightmare as the woman in the interview. She has MG, the docs undiagnosed her and she has been in critical condition for a very long time because they are withholding MG meds. They claim she has conversion disorder, not MG. A person would have to be really, really crazy and talented to fake not being able to breathe!!!!! I doubt there are ANY people on a vent because of mental illness on the part of the patient…..but the doc’s mental state is a whole other matter.
Because I have had MG for what seems like forever, and because I have been on MG support groups and read up about it, I feel like I know way more about MG than the average neurologist. Since MG is a rare disease, some medical people NEVER see a case in their lives. If you look up worst case videos of MG, it’s how we look in crisis, not every day! Some people aren’t wise enough to figure that out without first hand experience.
After being me all these years, and knowing people with the same symptoms, it’s hard to understand why some docs aren’t that smart. I have to keep reminding myself, it’s a RARE disease. I still think there’s more to the story than that, especially the cost of MG treatment, but that’s a whole other discussion.
Apparently there is a crisis in this country. I have heard from general medical advocates that when doctors don’t know what’s wrong with someone, more and more, a psychiatric diagnosis is slapped on and psychiatric meds are prescribed. In the warped minds of these evil, lazy docs, the patient doesn’t get better not because they aren’t given the correct treatment for the correct disease….but because they “aren’t trying hard enough” to shed their psychiatric illness. I am seething from what I am seeing people go through.
The woman I met in July has gone through years of MG treatment. She was looking vibrant and alive in July. As what happens to most of us with MG, she went into crisis. Now she is on a vent and being treated for conversion disorder instead of myasthenia gravis. You would think prudent people would give her Mestinon or IVIg….maybe not tell her and observe what happens! Instead, they are withholding that which she most needs. They are killing her 😦 This idiocy has got to stop!!!!!!
I came down to the computer room to calm down. The fire alarm keeps going off. The woman in the apartment diagonal across the hall from me set fire to her apartment with a candle. I kept hearing faint beeping and briefly thought maybe my cellphone was found. No such luck. Then I realized my apartment was filling full of smoke. Almost instantly the strobe light and ear piercing all apartment building fire alarm went off.
I keep Olive’s cat carrier on my dresser for just such emergencies. She hid under the bed, the chair, the couch, then on the cabinet above the fridge. I used a wooden spoon to pull her towards me and caught the leaping cat with only a few scratches. I stuffed her in the cat carrier, flung 2 coats on the wheelchair, grabbed keys and wallet, put my skirt behind my back and fled the building. I was just wearing a big shirt and my purple long underwear. Once I was safe outside, I apologized to the men around, stood up and pulled on my skirt and put on both coats and my gloves. This is the first day of the whole season that we got snow here in the valley and it has been coming down hard.
Then I asked the nutso woman who had started the fire if she had called 911. Nope. I called. The fire truck didn’t even have lights or siren on when it got here. I don’t think anyone else was on the roads. They used big fans to clear the smoke in my hallway. We had to stay outside a long time, then the firemen let us sit in the lobby. It took “forever” until the alarm and strobe stopped. Then for hours afterwards, each time they tried to turn the system back on, the alarm went off. Finally we were allowed to go in our apartments. Olive ran under something and wouldn’t come back out. I have my window open and a fan facing out, but the smoke is nasty and acrid.
What a fun way to spend Christmas!!!!
The torched apartment is uninhabitable. I have complained about this woman before. All summer she smoked spice in front of my window. A couple of days ago she looked dead out in her car after doing drugs. I watched for about an hour until I saw her move and breathe again. Soooo NOT happy about that sort of neighbor 😦
My lungs have been in tough shape this week. That didn’t help.
Well, I hope your Christmas has been less eventful than mine. I hope to get back online sometime in January. I did get one of those free 250 minute phones that come with food stamps. Now that I won’t be paying for a phone, I hope to use that money for internet access. I have seriously missed getting online on something bigger than a cell phone. Anybody have input on Xfinity? Good or bad internet provider? One good thing about them is all the free wifi hot spots around SLC.
I went to DI this morning to buy kid books. I dropped my purse on the floor and picked it up. Unfortunately my cell phone fell out and I didn’t know it. It was promptly stolen. I talked to the store people who reviewed their security cameras, I went to the cops, the bank, erased my phone remotely, cancelled StraightTalk, etc.
I tried to get a free Lifeline phone, but the last time I did that, it was for Rhett. The system says I still have Lifeline more than a year and a half after it was cancelled. I need to call the government and figure out the glitch.
Now no phone, no computer. My blog looks very different on this borrowed apartment complex computer than on my cell.
I am thinking I should just use a free phone and get internet. Tablets are a cheap alternative to computers now. Unlimited internet would open up a whole new world to me.
I am soooooooooo bummed about my phone. I am not thinking nice thoughts about the opportunist who grabbed it and ran. Grrrrrrrr…..
I haven’t recovered from yesterday yet. I feel like a groggy, sleepy, bazillion pound blob. I can barely move and breathing is a struggle. I have an appointment in a couple of hours.
I wrote that much and realized I had to get ready. I checked the weather and it said a partly sunny day with no precipitation. I get outside and it’s raining! The closer I got to TRAX, the bigger the raindrops. I got off TRAX at the south campus station and it was SNOWING!!!!! Figures. I had to go 7/10ths of a mile by wheelchair to the orthopedic center. What a PITA in the wind and snow. I got there a little too early and hadn’t eaten, so I blew money on their cafeteria. I got a breakfast burrito.
Went back to PT and was whisked to an office. The doctor doing the back pain study was very nice, and fun to talk to 😄 He is from Saudi Arabia. His country FORCED him to come here for education. He said he was scared because he’s Muslim and he had heard bad things about how he would be treated. He has been here 5 years so far and loves it. After an hour of the professional stuff, he spent half an hour telling me about his father’s mango farm, his trips to the Red Sea, and he had pics of Yemen/Saudi feasts. He told me the three best places in town to eat that kind of food. Heather…remember Shawarma King, Shish Kabob House and Shahrazad Restaurant. That’s his order of preference. 😃 We had a great time.
When I left the building after noon, it was a gorgeous day in the 40’s. I met an interesting guy at the bus stop. He works at the SPCA where I got Olive. He is excited because he is soon going to adopt a miniature shepherd as a service dog for his brittle diabetes. He told me to get on the black campus bus. The wheelchair lift quit working and the bus driver had to use a hand crank to get me on the bus. He flew around an intersection at excessive speed and my chair did several 360’s inside the bus. What a rush! I got off at the regular hospital so I could use the handicap bathroom. Then I got free water in the cafeteria and snarfed up their wifi. I went out to TRAX, pushed the handicap ramp button to get on the train. The ramp came out half way, the door closed and the train took off!!!! There was only inches between my wheelchair foot rests and the side of the train. I was wedged between a pillar and the train, on the platform. GEEZUM CROW!!!!!!!!! By the time the next train came along, my heart rate was almost back to normal.
I got off TRAX and zoomed a few blocks to my counselor appointment. I talked to him about the transitional care person. He didn’t know anything about her. He wasn’t impressed with what I told him. We had a good time talking. We did get to a part that made me cry. He was doing a computer assessment thing. He asked if I feel guilty. That’s always a sure tear jerker for me. I told him that I feel guilty for being sick. He looked at me incredulously and with almost the same facial expression and tone of voice said pretty much what Heather always does. I said I believe in the atonement, I know I have nothing to feel guilty about, I have read books about it and been in counseling, but I still feel guilty. He said a huge burden would be lifted off me if I could learn to believe it’s not my fault that I am sick. Sigh….
It sure was nice to come home in the daylight! Enough people try to run me over with perfect daytime visibility. I got to my apartment and there was a pile of boxes up against the door. Christmas! Wow 😊 Thank you! I don’t know what I would do without people helping me get things I need…and sometimes things that are wants, too. I appreciate the help from the bottom of my heart 💝
The zooming around and going to appointments has made me zombie like. A full night’s sleep would sure be icing on the cake. 😴💤
Ugh! I got up at 6 AM to take a shower and get dressed. I was out the door by 7. I had only made it a few yards when I was almost run over. Some idiot turned down the dead end one half block lane between this building and the parking garage. They were on their cellphone and bent down as they turned the corner. The car came diagonally across the lane, directly at me 😧 At the last second, they wildly swerved back. At the next block I crossed twice, north and east. Both times people turned right on red and came within feet of hitting me and the chair. At the next block, a woman was walking her dog. She kept turning to stare at me as I got closer. She liked my flashing headlamp. I told her I had almost been hit three times in two blocks despite the flashing light and large orange reflective flag. She suggested I wrap myself in Christmas lights 😉
Salt Lake City roads are wide…..so you can turn your team of oxen around. My flashing light was making all the road signs above and across from the intersections flash and glow. I definitely wasn’t invisible!
Got on TRAX and we made it one stop. Yet another idiot! A car had hopped the cement barrier between the road and tracks. They were hung up on the cement, with both tires running free. We had to wait for a train coming the other way. Then we each got off the trains we were on and switched to the other side. The stop I needed to get off at was the scene of the debacle. I think it was a Prius. The TRAX cops were trying to figure out how to move it. Crane? Geeze.
Several more times aggressive drivers almost clipped me at intersections as I made my way to the hospital. I’m surprised my BP was normal when I got to the neurologist’s office!
I like this neuro. He leafed through my medical records of past IVIg’s. He pointed out my droopy eyes and called my strength “profoundly weak”. We discussed how IVIg makes me much better. He worried about me getting IVIg because I have had strokes. He watched the video of my face and tongue fasciculations. He had his nurse copy all the records I brought with me. The neuro promised to read all the paperwork and he will see me again next month.
Like almost every neurologist before him, he suspects MS. He also wonders if I have other neurological things not diagnosed yet. He PROMISED that he will figure out what’s going on and TREAT IT!!!! More waiting. But at least it’s hopeful waiting. I made it clear to him how much I loathe the first neuro I saw in Utah. This neuro had some amusing things to say about the guy. Snicker….the nurse said they hear bad stuff about that idiot neuro ALL the time.
The TRAX ride home was uneventful. Crossing streets in my chair was much better in daylight. Got to the road DI is on and a big box truck came towards us billowing major smoke. It turned the corner onto my street. The guy standing on the corner with me was freaked. We watched it turn the corner and it instantly disappeared in wicked thick and acrid smoke. All around the roll-up back door, there was smoke billowing out. Our whole block was so bad that no one could see more than maybe 10 feet. I got to the lane and quick turned. The truck was parked on the street right in front of this building.
I don’t know what went on afterward. They must have used fire extinguishers on it. Yikes!!!
Home sweet home. I am going to rest. I earned it!
Still having my love/hate relationship with Valium. I love sleeping and HATE feeling dopey!
It was a weird FNB day. A new person went to get food from stores. She drove all the way here from West Jordan. I heard her telling someone that she only took about half that the store offered. What was she thinking!?!?!!! Later, I got a message that there was more food available at 1 PM. It was after that when I saw the message. Too bad. Hopefully that volunteer will figure things out over time.
It took me a long time to get ready this morning. It was incredibly painful putting clothes on. I sat down for the purple long johns and Ugg boots. What a struggle to put my left boot on! My leg and foot are so swollen that I almost gave up.
By the time I got home from FNB, there was no place else for my leg to swell but above my boot…and it hurt! I realized that the reason I am so SOB right now is the swelling all over me. My belly is swollen and all around my lungs is full of edema. It sure doesn’t feel good 😕
This morning my voice worked for a few sentences and broke. When the phone rang this afternoon, I was really surprised when my voice was perfect. You know what’s a bummer? I haven’t been able to taste today.
I got sleepy after 5 and woke up after 9. I writhed around quite a bit before I woke up enough to get up. It was wicked bad painful 😕 I had really wanted to skip the Valium tonight. The ache in my left leg is deep down. I am hoping I don’t have a blood clot or something like that going on. This pain is brutal. has it been three weeks now?
I just got an email asking if I would like to be part of a study about lower back pain. I’m signed up to see a physical therapist after Christmas and they want to talk to me first. Hmmmm…sounds interesting.
I spent the last hour going through medical paperwork for my neurologist appointment on Wednesday. This feels like my last gasp attempt at getting IVIg in Utah. I am both hopeful and terrified.
It was REALLY depressing going through doctor and hospital paperwork for the last couple of years. It seems unbelievable that so much has happened to me. I sure will be glad if my belly wound ever heals shut! This poor old body is beat up.
Wow, that was weird. The doctor doing the back pain study called me after 11 PM and made an appointment to see me Thursday. He was excited that someone answered his email and was awake. If they accept me in the study, I get $20 for cooperating 😀 Gee, I’m glad I took the nap.
Valium makes it possible for me to sleep, so that’s about the only thing I am good for. My brain cells are very much on vacation. I had two naps today. I am still tired. It’s better than being in the horrific pain I WAS in!
Myasthenia gravis is not impressed with Valium. It makes gravity be turned up. I feel like I weigh a bazillion pounds. If I don’t stop swelling up, I am going to weigh that much! When I wake up, I have to peel myself off the mattress. It’s a humongous struggle to get up from either lying down or sitting. I was hoping I might get used to being a druggie so the effect on MG would lessen. When these pills are used up, I hope my hip and leg are better so I can do without the drugs. But…it sure has been WONDERFUL to be in less pain! Interesting that Valium works better than narcotics on my pain. I think my muscles have been spasming way too long. Thank goodness for this intervention.
Oh, speaking of interventions, the care coordinator wrote twice today. She outright lied 😕 Claimed she never said I was part of any mental health program. Sigh… I am putting her on hold until I talk to my regular counselor about my concerns. The whole reason I went to these people was to be treated well by doctors. Sadly, mental issues seem to be a reason to discount valid physical problems. Instead of educating the ER doc who told me I had Munchausens, now a doctor that didn’t think I was crazy is wondering if I am, and why I need a keeper! I asked this woman NOT to come to my neurologist appointment. A lot is riding on this appointment. If this doctor doesn’t help me, I need to seriously think about fleeing Utah so I can go back to getting regular IVIgs. Sooooo many of my problems disappear with IVIg. I don’t want to keep being this sick and disabled when there is a known treatment that helps me.
The chills and fever cycles are getting more intense. Again 😕 I thought I was freezing tonight and then I went out to get my mail. Then I realized my skin was hot. Duh. Tricks me all the time. I look like heck. I look old and sick. Maybe I am trying to fight off all the community germs in this building. An awful lot of people are sick or just getting over something. It seems to wipe out folks for a week or more.
I learned something new about Facebook. I didn’t know I still had an “other” folder for messages while using my cellphone. I found it today at the bottom of a page that required 2 clicks. Now I feel really bad about all the messages I missed in the last year. Some were very heartfelt. Sorry. I only use FB to be on support groups and see what my daughter is doing. I never liked the whole friending thing. My newsfeed is mostly national parks and random photographers. I hide most people. I would rather exchange emails if folks have something to say.