I need help


This can’t keep going on as is. I either need someone to fix what’s wrong with me….or help me compassionately out of this life.

Last night I went to bed and endured 5 hours of horrid chills. I was neither fully awake or asleep. More of the flashing pictures that went with each sort of move in my body’s effort to warm up. I woke up, went to the bathroom, then slept 3 hours for real.

I woke up hot and sweaty, but have switched to chills and back a few times. It’s a cough up crud from my lungs day. I haven’t been able to eat or drink much for days. Today I have bloody diarrhea. The swelling in my groin and other lymphs is life-alteringly painful. I cannot emphasize enough how HUGE the swelling is….and it just keeps getting bigger.

It was utterly useless to go to the ER a couple of days ago. All they cared about was testing my heart. That’s NOT my problem! There has to be some sort of infection happening. I wish I had the results of the blood tests they did. I have a very long history of masked infections. I suspect it’s a combo of high dose steroids and the selective IgM deficiency. Usually infections are identified by growing them out.

OMG! Some idiot with a boom car is parked right in front of my window. The deep booms go right to the parts of me that hurt the most 😦 Turns out it is some sort of maintenance man 😦 They often have early morning meetings here for workers from all over the valley. Time to fire the jerk….or at least give him a talking to. He pulled up a few feet from my open window at 7:30 AM. Grrrrrrrrr…..I’m grouchy enough already!

I had 2 sips of kefir with my meds this morning. It made me soooooo sick! More of that bubbling out of me nonsense and no better luck with water. By 9 AM I just wanted to die. Every fiber of my being was in pain and the nausea was overwhelming. I wanted to try another hospital and kept debating where, plus debated if I should call my clinic doc or the internist first? To be honest…I was too weak to take a shower and that was holding me back from going anywhere. I did some serious praying and crawled back in bed.


Wow! I was conscious of sweat dripping on me a couple of times, but never woke up until 6 hours later. In my sleep, lots of people talked to me. I don’t remember who. It was very deep dreaming. I’m not sure what messages were conveyed to me, but I woke up different. It took a long time to become fully conscious. I realized I was sunken into the memory foam. I don’t think I moved at all while asleep. That was reinforced when I realized Olive was sleeping between my feet! When I took off my sleeping mask, it was dripping with sweat. My undergarments were all wet. I sat up OK! I realized I had more strength than I have had in weeks.

I easily stood up and turned off my breathing machines. I took off my insulin pump and had the longest shower in memory. I felt like I had to rinse out all my pores and get rid of the poisons. I was able to raise my arms enough to shampoo and I stood up the whole time! I got dressed without becoming SOB! I admit I was still a bit scared by the stinging in my lungs, but I could take much deeper breaths.

Once dressed, I was HUNGRY! I nuked a breakfast burrito. Most amazingly, I was able to stand up the whole 3.33 minutes the microwave was doing its thing. I used that time to slice a tomato and avocado and get some sour cream. I wasn’t sure if I should shoot up insulin. What if it was like this morning and I wouldn’t be able to eat? I ate the whole plateful! Then I shot up insulin.

I have been sitting here wondering what’s going to happen next? Will I keep getting better? Is this a short reprieve? This whole thing made me realize how much I miss night sweats. They would make my joints better and un-seize me. Today’s sweats were more like breaking a fever sweats. At no time was I hot, though. These were more like cold sweats. I feel a zillion times better than this morning. Even if this is temporary…I am grateful!!!!!!


I have had a boatload of people praying for me. Wow! Powerful!

I woke up to an email from the case manager who sent me the phone numbers of 3 hospice places who will accept my insurance. I need to look up who the numbers go to so I can see if they are companies who have already been here. It certainly would not have been the first time the insurance company claimed it would be covered. Ummm…I just Googled the #’s given to me. A generic number for a whole hospital system is less than useful. I will try calling the #’s next week. I hope my voice will work.

For now….nobody could be more amazed than me that I feel better. Of course my groin and other lymphs are still hugely swollen….but hey….anything is better than I was!

Ohhhhh, darn! 7:30 PM and I got up to pee. Now the other side of my groin has swollen lymph nodes. They, too, are wicked painful 😦 Then I went to the kitchen, hoping I could cook something. I was too SOB to do more than grab a quarter cup of yogurt. Got back to my chair, and was already soaked in sweat. Dang it! Dang it! Dang it!



Hot day!


We broke the record high for today by 4 degrees! It was 66 degrees out there. I have had the window open ever since the morning chills turned into sweats. Gosh…..how I hate chills! Sooooooo painful! Too bad I was busy being sick. It would have been nice to go outside.

Really….I should be grateful that I was sitting up and breathing. Last night was awful again. When I slung my leg into bed, pain jolted through me. The swollen lymphs in my leg had multiplied. Now the hard bumps are down my leg, across the top of my legs and in my groin. This afternoon I got brave and tried to feel all the lymphs. It was so painful that my vision blacked out. Every time I move my leg for any reason, the pain makes me so queasy that I want to barf.

Oh….speaking of barfing….all I consumed today was a small amount of kefir. That and water just kept bubbling up and out of me. Eeewwwww. My shrink says I am so full of edema that there’s no room left for anything else. He is going to try to help me out. He referred me to a medical social worker….or some name like that. This woman would help me get a hospice company that will accept my cheapo insurance. Won’t hold my breath, but that would be a nice bit of helping. I had given up on trying any more.



Olive has never allowed me to pick her up….and she was not about to sit on my lap. She has always preferred down by my feet. Once I got this sick, she got clingy.


I took these two window pics at the same time…with and without a flash. I wanted to show how blue the sky was at dusk.



I’m of two minds about seeking further medical treatment. I needed today to think about it….as I went through hours of chills, then sweats, then chills. I still am not sure what I am ultimately going to do.


Quick summary


I woke up, sat up…and screamed. The pubic area swelling got bigger overnight. Huge 😦 I called my internist. His nurse spent 17 minutes screening me….then said he was sending an ambulance. I said NO! I wasn’t willing to leave my power chair behind. I took TRAX to the hospital. I handed the woman my ID in the ER and was called in instantly. Almost as quickly, my port was accessed and blood was drawn. I had an ECG, chest X-rays, an echocardiogram and who knows what else? It was a blur. I peed in a cup and was alarmed to see how dark it was.


If you’ve been reading my blog, you know my biggest problems….the sweats, intense chills, lung problems, MG worse, SOB, weakness, edema, etc. Over the course of 10 or so hours, I saw many different nurses, docs and techs. The ER mostly cared about my heart. I insisted my heart was fine. By late afternoon, I had a mean doc with no listening skills. He says I have over 50 pounds of excess fluid on me. He said he wanted to put me in the hospital, drain fluid off me and then send me to a rehab facility. I did not want to go to rehab. He said then he wasn’t going to admit me! He got paged and never came back. End of “discussion”.

Hours later, a nurse came in with my discharge papers. I was supposed to go home and take lasix. They never tested my pee or weighed me. I have been taking diuretics since November…and they only make me sicker and more swollen. Nobody cared that MG makes me too weak to make multiple bathroom trips…..so the MG needs better treatment. There was no one to argue with. Yup….I cried at the futility of it all….and kicked myself for even going to the ER.


There’s a lot more…but I am literally beat and am in the grip of violent, icy chills 😦

Mad at myself


To me it feels like darned if I do, darned if I don’t. First off, I have to admit I think other people are crazy when they get too prissy about germs. Makes me nuts when people say they avoid family gatherings, shopping, public transportation, doc’s offices, etc. so they won’t catch some cooties. Yes, I feel a bit squeamish in a waiting room full of coughing or a TRAX train full of sneezers. I am most worried about mailboxes here, the front door box to get in with our magic fobs or the dumpster gate latch that virtually everyone and their nurses, friends, family and random workers touch. Just think of all the germy things a postal delivery person touches! Or how about the dumpster dumpers who go from facility to facility, filling up their garbage trucks? Each of us touches a zillion things that other people touch….or breathe the same air as countless folks from every sort of life situation. If you think about it all too much….we would all become paralyzed in fear. I try not to go down that road by washing my hands and trying to ignore reality 😛

Humans have lived this long amongst germs. I have the darned primary selective IgM deficiiency. “These patients have low IgM with recurrent infections that are often severe. There are variable antibody responses. Some patients are asymptomatic. This disease may be clinically similar to CVID though it should not be referred to by that name. It is important to note that IgM deficiency is also seen commonly in DOCK8 deficiency.” I have had way more than my fair share of strange things wrong with me!


Wikipedia says…Isolated primary immunoglobulin M deficiency (or selective IgM immunodeficiency (SIgMD)) is a poorly defined dysgammaglobulinemia characterized by decreased levels of IgM while levels of other immunoglobulins are normal. The immunodeficiency has been associated with some clinical disorders including recurrent infections, atopy, Bloom’s syndrome, celiac disease, systemic lupus erythematosus and malignancy, but, surprisingly, SIgMD seems to also occur in asymptomatic individuals. High incidences of recurrent upper respiratory tract infections (77%), asthma (47%) and allergic rhinitis (36%) have also been reported. SIgMD seems to be a particularly rare antibody deficiency with a reported prevalence between 0.03% (general population) and 0.1% (hospitalized patients).

Sooo…..should I live in a bubble…..or just bull my way through life and hope for the best? I do the latter. And then I sometimes second guess myself. Like for going shopping yesterday. I got sicker and sicker as the evening went on. By the time I went to bed, I was feeling horrible. When I woke up this morning, I was back to intense misery. I went through 4 hours of nasty chills, creepy skin and wicked sore muscles. My lungs felt congested with crud. Then I got back in bed and slept for almost 2 hours. (And the RA came to check up on me while asleep) When I woke up, my body was on fire! I was glad that the chills were gone, but now my hair was dripping wet and my clothes were soaked. I opened the window all the way and pointed the fan at me going full blast.

For many hours now, I have been all hot and sweaty. I have used a whole box of tissues, and then some, this afternoon. I have coughed junk out of my lungs for hours. At least it no longer hurts so much to breathe! I keep mentally beating myself up. Was it stupid to go out yesterday? How else would I know how much I can endure unless I try? I cannot roll myself up in bubble wrap….can I? How can I make the best decisions? If I play it safe all the time, am I better off dead? How the heck am I supposed to figure out these answers?


It has been rather nice with the window open 🙂 Officially 59 degrees….but it was probably over 60 downtown. With the rain and warm weather, all the tree buds have gotten much larger today 🙂 Sure is a gray day, though. What’s weird is that we are warm in the valley, but the mountains are getting lots of wind and snow and avalanches. So glad to have good air!!!!!! 🙂


Hyper Helen came to my window. She has been avoiding me ever since she said I was going to die soon…..maybe in August? Tonight she said she was going to pray that I die tonight 😮 Well, when she left, I closed my blinds and visited the bathroom. For days now, it has been very difficult to wipe after peeing. I thought maybe it was from me flopping on the toilet in weakness and I just needed to position better. Tonight I could not get my hand past the toilet seat. That’s when I realized….my right groin area is hugely swollen. It did not hurt until I felt around to see if it was lymphs. Now it hurts quite a bit 😦 Simultaneously the area of my left chest where my port is and the lymphs in my left neck, swelled up and hurt. Maybe Hyper Helen is more right than she knows? I have been soaked in sweat for about 7 hours now. I prefer that to chills!


A parade of concerned neighbors


Last night was rough…but not as bad as the nights before. The queasiness was a step down, the shivers were less intense….but I still felt awful. I was not able to stay asleep as long as I would have liked. Early in the morning I was dreaming about a shower, so I gave up, got up and showered. All that sweating yesterday was gross! Also, the bed was wetter than usual thanks to my leaky leg.

I don’t know what was up with the hot water, but it was almost non-existent. I had to turn on only hot water to get merely tepid water. Seems like the boiler here is often wrecked. I know the feeling. I’m a wreck, too. Usually I just let shampoo run down my leg and then rinse it well with the hand-held sprayer. I hate to touch where the leak in my leg is. Today I rubbed the area with one hand while spraying it. Not sure if that was a good or bad thing?

The morning was spent coughing and choking and getting gunk out of my lungs. I was wondering if it’s a renewal of the never-ending pneumonia? At first I had chills and after a few hours, I went back to sweats. I opened the window and the blinds. It was cloudy and spitting rain, but in the 50’s. I had the fan on me full blast.

For breakfast I had the last of the mango kefir. I wasn’t hungry. Later, I was getting queasy after taking meds, so I made myself a toasted cheese sandwich with the Foreman grill. That was the most soothing food I could think of. Other than coughing, blowing my nose, listening to the news and checking out the latest disasters online, what the heck happened to the first 8 hours? I was mostly a sicko zombie.


Ohhh….the people! Lot’s of folks glancing in my window since it and the blinds were open. Fairly early, the RA knocked on my door. The missionaries asked her to do a wellness check on me. She had lots of questions about what to do when I’m dead. She said she cares about me. I could barely croak out much with my broken voice.

Sometime after 1 PM, I went out to get Friday and Saturday’s mail. I had realized I didn’t get a new set of paratransit stickers for doc appointments. I was hoping I would find them in the mailbox, and I did. Since I can only use paratransit below 40 degrees or above 80, my chances of getting a ride to a doc appointment is getting slim. Figures I need to go to my internist soon. While at the mailbox, Gordon rolled by to talk. Then my neighbor with Dot the dog. Then a woman who always hugs and kisses me that I can’t remember the name of. She just got out of the hospital after 3 weeks there. All said they were glad to see me, all expressed amazement I am still alive and all say they have been worried about me….and they all think I look, act and sound like heck.

I felt like I needed to boldly pretend like I was cheating death! I went back to my apartment and got ready to go shopping. It seemed like the most unlikely thing I could do 😛 The people who saw me coming and going were taken aback. I’m ornery like that. I was gone about an hour. I had a bunch of free coupons for food at Smith’s. I spent $17.86 and saved $19.49. Not bad 🙂 Then I went to TJ’s for bananas and berries, cheese and avocados.


Drippy leg. Did washing make it worse?

The trip home was difficult. My leg leaked so much that the top strap of my Birks was soaked through. The wind had picked up by the time I turned toward home. My left leg was really cold from being all wet. When I got in my apartment, I took pics of the wetness. GROSS!!!!!


Eeeeeewww!!!! Wet strap, soaked foot bed and wet foot prints.


Oh, my gosh. I was weak. I only put away things that needed to be cold and collapsed into my chair in my nightgown. I figured no one else wold drop by. Wrong! Olive seemed upset by my leaky leg….then next thing I knew….there was a knock at the door.


Olive checks my leg and tells me I should have stayed home.


Well, I was even more of a wreck. My eyes wouldn’t focus, I was wicked bad dizzy, my words were slurred and choppy. I kept thinking I must look and sound like someone under the influence of drugs or alcohol. Kent and Pauline talked to me, petted Olive and said I didn’t look well. I think my head falls to the side sort of rhythmically while my eyelids flutter. Silly me…I thought maybe they wouldn’t notice. Pauline said when I get like that, she knows it’s time to leave. They were gone in a flash.

Hmmmm….all these people thinking I’m at death’s door gave me a lot to think about. Now that it’s evening, I am back to those stupid hand cramps. I’m also going back and forth between fever and chills. Here it goes again. Sigh….



10:10 PM

My hand cramps are similar to these pics I found

The chills started at exactly 10:10 PM Saturday night. For an hour or so before that, I kept getting the sort of hand cramps that feel like they are going to break my hand. When I lived with Heather, I would start yelling OW, OW, OW, OW, and she would know to come running and flatten my hand. It’s really, really hard to do myself. For a few days now I have been getting those cramps. OMG! I hate them 😦 What’s weird is that cold often brings them on. I don’t yet feel cold when these start lately….but eventually the chills start.

I fell asleep pretty quick, but was soon in the agony of half awake, half asleep chills. I was dreaming in static pictures…like looking at a newspaper. Over and over and over, certain pics popped up that illustrated my chills. It was maddening. I was using my foot against the wall to move my whole body. Then I would do this shiver shimmy the length of me. Sometimes I bounced up and down on the bed. I could not wake up and I could not warm up. My muscles seized, my teeth clenched. Every once in a while, Olive would run in meowing and walk all over me. She was freaked out. It seemed like this went on for hours. I was finally able to wake up and it had only been 2.5 hours. If a dead body with rigor mortis could feel, it must feel like this.


I turned the heat up to 90 and have been sitting here for an hour. My muscles are only getting more locked up 😦 This is torture! Too bad heat is not the cure for chills 😦 I’m sitting here in a hot room, covered in roving goosebumps. The teeth clenching thing is awful. I cannot stop it. All my muscles clench up.

I don’t know what time I went back to bed. I went through hours more of alternating fever and chills. It was horrible. I didn’t wake up until 11:30 AM. I feel worse than ever. The chills are not going away. I am very weak and shaky all over. I am also thinking that I should probably be getting better medical care. It’s always hard to know when to go to the ER. It feels like the pneumonia is coming back…if it ever left. My lungs feel like they are on fire….stinging fire.

The missionaries were here after church. I was embarrassingly wimpy and weepy. I am more like a wild animal than part of civilization. The worse I feel, the more I want to be alone. It’s because it’s just too hard to breathe and/or talk. All my energy is needed to breathe. It hurts to hear voices or noise. Light pierces my skull. Movement hurts my eyeballs and head. Everything overwhelms me. Being this sick really sucks 😦

1:50 PM. The chills are back in full force. I have the heat back on at 90 degrees. 5 PM and I have the window wide open and the fan on me. I am starting to suspect a kidney stone and/or infection. I’m getting wicked sharp back pains in the kidney area. I’ve had these problems in my distant past, so I know what they feel like 😦 It’s 6 PM. I wish I knew what to do! I think it’s raining out and it’s getting dark. Sigh….. 7 PM and I am wondering if there is a difference between the pain at the bottom of my right lung and the sharp kidney area pain? Same thing? Related? Different? I am soaked in sweat. Half an hour later and sweat is pouring down me in rivulets. Hard to believe I have ever had chills. That probably means they are next 😦 My head is pounding.

Uh, oh….at 8:30 PM, I stood up and discovered I was soaked…and so was my chair. Within moments, the first goosebumps started. Soon, my muscles started seizing up. Next, I will be enduring more chills. Not looking forward to day 3 of my own personal Groundhog Day. I keep asking how much more I can take?!?!?! I don’t really want to find out.


Extreme chills and chipped teeth


What a horrible night! I had chills for hours before going to bed. Once in bed, I was ice-cold through and through. My muscles were seizing up head to toes….the worst being my head and belly. My legs would not sit still and churned and kicked for hours. While falling asleep, at first I was shivering lightly. Soon my teeth were clashing together. I woke up 4 hours later with all my top teeth chipped on the inside. All teeth on the bottom felt mashed into my jaw. Every inch of my skin felt raw and creepy. The pain of getting up and going to the bathroom was definitely a 10. How can all of me hurt so bad? And oh, my gosh…..sooooooooo sick to my stomach! Now what?

How can I be in this much pain? Every single muscle fiber in my body hurts 😦 I thought I had already experienced the worst chills possible. Last night was the worst ever. I am bruised and bumpy. Every bit of skin and muscle is exquisitely tender and painful.


It really makes me mad that I went along with the doc. Even when I told him my concerns, they were brushed off. I was trying to be a “good patient” and follow his instructions. I was taking first the antibiotic, then the cough syrup, extra albuterol, extra Benadryl and the diuretic. Why don’t I ever learn? Once I go down the pharmaceutical path…I only get worse….and always have.

I seem to be sensitive to or downright allergic to many meds. Looks like that’s what made it all worse this time. Yes, the antibiotic started me feeling better, but antibiotics always make me feel icky, too. Add all the other meds and the chemical soup made me even more allergic 😦 It was a snowball. Now that I stopped everything yesterday, my brain feels better and I am peeing more. I plan to go without diuretics for a while before I start my new script.

Thank goodness for the missionaries who stopped by today! I am too weak to be good for much. They retrieved a lost drinking cup under my bed, put on a new bed sheet, took my dirty laundry and fixed the refrigerator shelf I fell on. Tasks that only took a few minutes, but are impossible for me to do myself.


At least the air is cleaner! That has to have a significant impact on me feeling better 🙂


Depending on which weather company site I look at, the high today was somewhere between 54 and 60. I had both windows open for a while 🙂 All day, the slightest physical stuff had me soaked in sweat. So far tonight, no chills. I sooooooo don’t want to go through that again!


Very amusing!

When I looked at yesterday’s blog post today, most of the cat pictures were replaced by new cat pics. I was soooo confused! I had saved them using screenshots. So I refreshed the page and got a whole new crop of cat pics. Well….DUH! Because the pics were labeled with Trump’s name, the Make America Kittens Again chrome extension changed them to kittens 🙂 Lot’s of cute, cuddly kittens!



You know what else is funny in a sad way? Often before I answer someone’s question in a Facebook group, I click on their name to get an idea of what sort of person they are. Before the election, I was horrified at the women who had signs saying they were a Trump girl. Usually the rest of their feed was a bunch of hyped up BS, too. I have noticed that almost all of those women have now deleted any trace of how they once felt. If only they had paid more attention to facts BEFORE the election 😦 Ah ha ha ha ha ha….I Googled “i am a trump girl” to try to find one of those high heel emblems. I got a whole page of kitten pictures 🙂 I had to use sneaky tactics to find what I was looking for.

As soon as I leave the little bubble world in front of my fan, I become hot, sweaty and even ditzier. My left eyelid slams shut and I’m sooooooo weak! The longer I sit in my power chair, the more my whole body slumps to the left. I am confused. By the time I saw the doc today, I was so hot and swollen that I could barely think. He would start on one subject, play with the computer or leave the room and it seemed like there were few complete thoughts or sentences. At first he was going to give me another round of antibiotics, but he needed to go look up which ones were OK with myasthenia gravis. He came back frustrated and said I was really too complicated for his clinic 😦 He said I was welcome to keep coming there for simple stuff. What to do with my health is ever simple???


He says because I am allergic to sulfa drugs, Bumex made me sick. He prescribed 30 pills of Spironolactone. He thought about and rejected several others. It was hard to keep up. He never did prescribe an antibiotic. I’m supposed to go back in 2 weeks. He says my wicked bad edema is causing fluid to leak into my lungs and I need to get the edema to go down to make my lungs better. The whole thing feels like a hamster wheel of cause and effect. The harder we try to fix one thing, the worse everything else gets!

I came home and made some scrambled eggs. I was in agony 😦 I could only cook while draped over the counter. By the time I got to my chair, my clothes were soaked and my hair dripping. I had to towel dry several times before I could eat.

Oh, I just remembered….my BP was 180/80 when the nurse first took it. He freaked out. Later, he tried the other arm and I was 140/80. Thanks, steroids! My oxygen saturation was 90 at the highest and 80’s at the worst. I hate being a wreck 😦

I watched some TV and read a bunch of awful Trump stuff. I have never felt so bombarded by bad national and international news. Despite it all, I must still have a hefty will to live, as I am still here. It got too hard to breathe, though, so I took a 2 hour nap. Our snow melted a lot while I was asleep 🙂

Sooooo…..I switched the pouch thing from my old to the new wheelchair. The poor thing is all holey again, despite all the times I have sewed it. To me, switching it to the new chair meant I was committed to using that chair. Well….on the way to the clinic, the chair was making funny noises. By the time I got back to my own door, it was making a racket. I wrote to Mr wheelchair man. He says a fix-it guy will be here next week. I will believe it when I see it! This newer chair has been a total lemon 😦


It has been a gray and drippy day. The upside to that is while I napped, the air got cleaner! 🙂 Nice to see it in the green zone!!! I wish we could stay there. But, we are not supposed to have much rain the next 2 days, so pollution will build again.


I get a double whammy of crazy Republicanism now that the Utah legislature is meeting. It would take a book for me to write about all the idiocy here. Utah is bottom of the barrel for school spending. More teachers flee than stick around. The governor does not want to raise taxes. They have enough money for all sorts of stupid stuff like moving a prison, building a coal port in CA, paying legal fees for politicians who broke the law, etc. Then there’s the Republican opposition to Bear’s Ears National Monument and while they are at it, they want to shrink Grand Staircase-Escalante National Monument. This is so politicians can make more money by raping the land of natural resources. For ohhhh, so many things, Utah is a laughingstock and object of disgust.

This article in Outside Magazine was just published, but is already outdated. The push is on to transfer federal land to the state of Utah. And, thanks to the horrible air pollution that the legislature likes to ignore, combined with the public lands issues, the Outdoor Retailer Trade Show is thinking about moving to Colorado. It’s a twice yearly HUGE money-maker for Utah. Most things Republicans are for just make me smack my head. No wonder my head hurts 😛


I wonder how much of the forecast will be true? Last week’s wasn’t right thanks to the inversion. Once temps are over 40, I cannot take paratransit. What a useless “service”. UTA is another Utah thing to hate. They are part government, part private and rife with corruption. When TRAX works and the ramps let me on and off, I like going that way. This year I have been left behind at the station numerous times. I’d love to see some of the proposed UTA changes. I won’t hold my breath, though.


My dislike of Utah is intensified each time I wish I had a decent neurologist and think about how much IVIg would make my life so much easier. I already live in a version of hell. Anything after this….dead or alive….has got to be better.



Utah’s air and Alzheimer’s


This temperature inversion has been truly awful 😦 Every TV news program has stories about it. On the local FOX station, was a report about the link between our air pollution and an increased chance of getting Alzheimer’s. They even mentioned people like me! I have 2 copies of the APO-ε4 allele. Less than 2% of the population is that unlucky. It gives me a high chance of developing Alzheimer’s. The new air pollution study says my chances are also 3 times higher (again) because I am a woman and have 2 copies of the APO-ε4 allele and breathe in Utah air pollution. I am so screwed!


I was sitting here in my nightgown, minding my own business when Mr wheelchair man came in with hooks for the back of my chair. They might be a good idea in theory, but in practice, they suck. The hooks go on 2 rails on the back of my seat, instead of smack dab in the middle like my old chair. That means I will not be able to go through doorways once the bags are hung off my chair. What a PITA! I’m sure I will be a menace to merchandise in aisles while in stores…if I have shopped in one store, then go to another. At least the guy took out my garbage when he left 🙂


I had to go outside in the rain 😦 I had run out of meds and needed to go to the pharmacy a block away. I was totally soaked in sweat from the effort to get dressed. Got out into the hallway and had to keep wiping the sweat off my face. It was my first time over to the clinic in my “new and improved” power wheelchair. The chair does make it through doors easier without the stupid hydraulic outriggers that were on there. Whew! While I was in the office, I made an appointment to see my doc.


When I got back in my building, I was waylaid by a few peeps. More new and interesting gossip 😛 Then I stopped in the manager’s office to tell them about all the Google emails. Whoa! She was pissed. She has been getting the runaround from Google for awhile now. She felt inspired to call corporate. I just paid February’s internet so I hope I don’t get stuck in the crossfire. When I turned my chair to leave, another woman in the office said I turned green, then white and looked like I was going to pass out. I felt even worse.


I am not very functional. I cannot stand for more than a minute or two. My voice is 90% broken. I can’t stop sweating. It’s hard to breathe. I am wicked bad dizzy. If I do anything more than sit still in front of the fan, it feels like doomsday.


Having Make America Kittens Again change all the Trump pics to kittens was the highlight of my day 😛


Make America Kittens Again


Looking at all those Trump photos was making me physically ill. Have you seen Make America Kittens Again? I added it to my chromebook. It replaces Trump, and a few other choices with something much cuter…kittens! 🙂 I heard of this a while ago, but now that Trump is everywhere, I decided the ability to substitute kittens just went from a curiosity to a necessity. Too bad it doesn’t work on Facebook. But….when I clicked on a FB story, the pic was replaced on the actual website.

I spent most of today having a sharp pain every single time I took a breath. It’s my lower right lung. I was tired of wincing and crying so took a 3 hour nap this afternoon. I could still feel the pain in my sleep.

When I woke up, I decided to go through old paperwork and get rid of the things I don’t need. Once that was done, I wanted to take it out to the shredder bin. I wrote out this month’s rent check, got several days of mail and bumped into the Relief Society president. It’s only when I interact with others that I realize just how crappy my health is. Getting dressed left me soaked in sweat and gasping for breath. When the pres said hi to me, I couldn’t even see her through the blur. Talking was difficult. Staying focused was tough. I really feel awful 😦


I was glad to get back in my apartment, put a nightgown on and sit back in front of my fan. I feel slightly more alive with the cool breeze. And speaking of cool….all that warm weather forecast for here is only above the temperature inversion. Here in the valley it has been cold, damp and murky. We here in SLC were honored to be #1 in the country for air pollution yesterday….NOT! 

There’s not much interesting going on in my life. Mostly I am just sick and miserable. What a life, huh?