I feel guilty that I am not happy

This morning I took the Paratransit bus to my neurologist appointment. It got me there way too early, so I spent 45 minutes staring at their reef tank while trying to identify the fish and corals online. A starter tank similar to the one in the office goes for $6000. It’s about a 200 gallon tank. The office tank had more species.


I got a guy nurse who was curious about my West Nile Virus. I wish I never had to think about or feel the effects of WNV ever again! I think it did more to wreck me than myasthenia gravis did. The nurse didn’t think my blood pressure was right. I told him that was a normal number for me when I am not in too much pain. I was 104/70. Nurses always expect fat people to have a high BP.

The weirdest thing about this morning was my lack of intense rib pain. I never bothered to tell the doc about all I went through the last 2 weeks. He’s the wrong kind of doc, anyways.


My lawyer asked me to get a letter from him that clearly says I need IVIg, I have MG and IVIg makes me better. He started his usual waffling. He’s willing to give me IVIg and tell me I have MG, but he was afraid to go against the teaching hospital that wants me undiagnosed. Then he looked at the medical records that Heather sent me from the MDA docs in Vermont and Florida, and suddenly his spine was reinforced. He actually got happy. He was gung ho on treating my MG and fighting my insurance company. How many times do we have to go through this???

What the heck does the unholy trinity of state/insurance/hospital DO to docs? Why do docs quake in their boots because of them? Having the back-up of Muscular Dystrophy Association clinic doctors gave my good neuro the courage to believe his own eyes. I am impressed that he grew a pair and is wanting to fight.

Now let’s hope the administrative law judge is fair and impartial. From my point of view, it’s pretty obvious I have had MG for a long time and that IVIg makes me into a functional human being. But am I worth helping? Am I worth paying the cost of treatment? We will see what the judge says next week.


Then I trekked home in the heat and strong sun. The whole way I ruminated on the neuro visit. He seems convinced that I also have CIDP. I am tired of being a freak of nature. I want to spend one day feeling OK. I haven’t felt OK since my IVIg wore off in March. I am surprised that my neuropathy is so bad. I couldn’t feel what he did to my lower legs. Sigh…. I guess if something is numb, that’s a plus with my body. It’s one place that doesn’t hurt too much.

By the time I got home, my lupus was really mad. I don’t feel very well from that :-( I won’t go into details. Ugh. But….I AM psyched that my rib pain is mostly gone. Will it stay away or come back? I don’t see my GP until next week. The worst pain tonight comes from my hips. My legs feel like they are trying to rip out of their sockets.

I have been on quite a streak of being bummed, grouchy, annoyed and/or pissed off. I am tired of being sick, tired of being poor and tired of being jerked around. I am not sure if I am being extra touchy or if the crap has been hitting the fan more often than usual. Well…..I am sure it’s both…duh!


I can’t believe I did that!

CPAP mask

About an hour after I went to sleep last night, I woke up and sat bolt upright while clawing off my CPAP mask. I couldn’t breathe. I felt the tubing, sure there must be a hole. There wasn’t. Then I realized the oxygen concentrator was not going.

With all the fans on, the A/C running and the CPAP making noise, it’s no wonder I didn’t notice the concentrator was quiet. Then I remembered. As I leaned over to turn that machine on last night, I saw one of my pillows on the floor. I used the oxygen concentrator to lean on while retrieving the pillow. Then I was wicked bad dizzy. I rolled over and fell asleep. I remember pulling the mask away from my face to get a good breath just before I conked out. Duh!

What a humongous relief when I went back to sleep with oxygen flowing. Ahhhhhhhh……..

I honestly cannot recollect anything about the day, other than extreme pain. It felt like someone put a hydraulic jack between my ribs and just kept cranking.



Around 4:30 PM, I put clothes on and went out to the lobby to wait for my lawyer. She came to pick up paperwork from me. While I was waiting, people kept coming over to talk to me. I had many, many wicked jolts of pain while out in public. So embarrassing :-( I was glad once the papers were out the door and I could come back to my apartment to hide.

I called Paratransit for a ride to my doc appointment tomorrow. Since it’s $4 each way, I only booked a trip to the doc, not home. It’s so hot out there that roads all around the Salt Lake Valley are buckling from the heat :-o One news story took the temperature of playground equipment. The one I saw was 195 degrees :-o Kids were getting badly burned :-(


Fox 13, video of buckling roads

My local Wunderground station said it was 108 degrees today. The good news is that there’s a 60% chance of a thunderstorm overnight. The bad news is that there might not be rain….just the thunder and lightning. We already have too many wildfires. The air quality is horrid. There are elephants sitting on my chest. Way too hot! We never even got this hot last year…..and now it’s going on day after day. Ummmmm…..yikes!

Screenshot 2015-06-30 at 8.32.47 PM

From http://www.utahfireinfo.gov/

I found some cartoons today that illustrate what I think about politics.



I like Bernie :-)




Feeling hot, hot, hot!

Ack! This is the third month this year to break hot temperature records. February, March and June are the hottest months on record ever for Salt Lake City. I liked that in February and March and don’t like it for June. The airport weather is less intense than the city weather, so it’s even worse than what’s on the news. The airport was 104 today.

The central 9th Wunderground station says it was 119 yesterday and 115 today. What really, really sucks about the hot weather is bad air. There are mandatory restrictions for transportation…but it sure is hard to tell.  Most people around here are “too good” to take public transportation :-( It literally makes me sick. Cough….cough, choke….choke. It’s gross at rush hour.

Speaking of air quality, the pigeon crap is on again, off again in intensity. I saw the landscapers today. I hope they are finally going to cover up the nastiness. They haven’t yet.

I went out to the public areas of this building for a few minutes. I needed some copies made. My voice kept going between broken and OK. Seemed like everybody was coughing :-( Ambulances and fire trucks have been here a lot. None of us could figure out who they have been visiting. Just in the few minutes I was out there, there was a line of people going to the manager to complain that their A/C’s weren’t working. I am glad I live in the shadow of the building. I am also glad I turn my A/C off every afternoon. The old guy says that keeps the unit from freezing up. I just get tired of being refrigerated and switch to evaportaive cooling. I get in the shower clothed, then sit in front of the fan with the window open. At night, before bed, I turn the A/C back on again and close the window.

At 5 AM, I got up to take meds. My blood sugar was 178 :-o Then I went back to bed and got up around 11 AM. My blood sugar was 125. I guess it’s the dawn phenomenon. That’s why my a1c is always higher than I think it’s going to be.

I think this cartoon is pretty darn acurate. It’s from the Salt Lake Tribune.



As I type, I am watching channel 5 NBC local news. The station is owned by the LDS church. They were talking to Senator Orrin Hatch. It was all I could do not to puke. He sure puts a very different spin on very bad US policy. Too many people in this state listen to stuff like that, don’t care about the deep down issues, don’t read or listen to other sources and vote straight Republican, smiling as they financially and otherwise doom themselves and their children :-( In Utah, people can choose to vote for just Republicans, using one check mark, without bothering to learn about each candidate or what they stand for. That’s how we got the last two corrupt attorney generals who are accused of all sorts of bad things and are fighting in court for their freedom. I still cannot get it out of my head that the attorney for one says it’s just business as usual to accept bribes. And most people in Utah barely bat an eye!

I don’t feel well, but what else is new?



Paying for it today


Silly me. I thought I got away with going out and about last night. I thought waiting until evening would minimize any problems with sun or heat. I felt so clever that I cooled down while out and did a monumental job of cooling down when I got home. Ha ha ha ha ha ha!!!!


Today I have total melt down diarrhea and a killer headache. I am extremely nauseated. I am absolutely useless and am in tons of pain :-( Well, that was fun, huh? NOT!



It’s now evening and it has only gotten worse. I am severely dehydrated now. The pinch test leaves the back of my hand standing up like a knife edge. The more water I drink, the more I have to rush to the bathroom. Ohhhhhhh……my guts hurt! This is like being cleaned out before a colonoscopy.


There was a day today? I don’t remember much.


Close, very close

That was my theme this evening. I started thinking about tomorrow being Sunday, that I don’t shop on Sunday and that much of my fresh food was gone. I also needed to take out the garbage before it became compost in this heat. As long as I was putting on clothes to get mail and take out the trash, I might as well keep going, right?

Since the arts festival is between me and TRAX, I went to the Courthouse station. I decided that whatever train came first would determine where I went shopping. It was the green train to the airport. I went to Rancho Market. 3 big tomatoes $1.29, 6 Roma tomatoes $1.65, 4 white onions $1.22, 6 Mexican squash .78, 2 1/2 pounds cherries $4.99, coconut water .99, small bag salt & pepper potato chips .99 TOTAL $11.86

Then I decided to take the red train to Trader Joe’s. Tart cherry juice $4.99, 4 avocados $2.99.

Then I crossed the street to Smith’s and got cottage cheese $1, weiners $1.50, bacon $2.49. After all that, I had two cents left of my food stamps. How’s that for cutting it close? I went home by power chair because the crowds on TRAX were awful. Besides my food purchases being very close to what I had to spend, my encounters with idiots had me very close to screaming.

Some snarly looking guy came along and pulled up within inches of me on his scooter. He gave off bad vibes. 2 minutes before the train was coming, I moved over to the next handicap waiting spot. There’s only room for one wheelchair per handicap door. I don’t know what happened, but by the time I got on the train, scooter man was yelling obscenities at a guy and he was getting it back twofold :-o Soooooo glad I moved away!

On the way home, I was sitting over a handicap symbol, waiting for the train. As it pulled up, a rude guy stuck his arm in front of me and pushed the door open button. That meant I had to wait for him to get on, then push the ramp button, which takes awhile. By the time I got on the train, he had already sprinted to the far end of the car. Why didn’t he just go to a different door, instead of barging in front of me??? He had to pass the other doors on the inside to get to where he went. At the next stop, the train driver opened his door TWICE to chastise the guy for yelling so loud into his cellphone. When the driver started to do it again, the rude guy got up, came down through the car to the seat next to me and continued his full yell conversation…..while glaring up towards the driver.

Getting on the next train was tricky. A stoned looking woman was sitting right in the middle of the only way to get to the train. I went very slowly and was afraid I was going to squish some of her. She didn’t move. I got through that gauntlet and there were a boyfriend/girlfriend entwined around the machine I needed to swipe my transit pass on. That was awkward. Then we get to the stop. A whole herd of kids decided to come out the door, even though the ramp button had already been pushed. Despite signs saying to stay off the ramp when it was moving, they all walked or hopped down it. Two boys were inches from getting their feet crushed :-o

Both times we went over the North Temple Bridge, I kept looking at the tracks underneath. It felt like something bad was going to happen. I got home to find out the FrontRunner train hit a couple of old people in a truck in Lehi. She died…he hadn’t yet :-(

It was way less hassle to endure the 97 degree heat on the way home in my chair than to get on public transportation again! Our high had been 106, so 97 didn’t feel all that bad. I wore my cooling neckband thing. It made the trip pleasant :-)

As soon as I got home, I took another shower with my undergarments on, left them dripping wet and put on my flimsy nightgown. I kept the A/C on and the fan pointed at me. I chilled down for at least an hour like that. I really need to do that several times a day. It makes my MG weakness a heck of a lot better! In the desert, evaporative cooling is the BEST :-)

My poor feet swelled up huge in the heat. After I got out of Smith’s, I took off my sandals and went home barefoot. A block from home, I put my feet in some sprinklers. Ahhhhhhhhhhh………

Now my blankety-blanking ribs are worse than ever. My diaphragm has been getting paralyzed, then going into spasms. But….I have food and don’t have to go out again until my appointment with the neurologist. YES!

Just near my apartment

Vehicle Recovery 6
Theft of Vehicle 306
Breaking & Entering 205
Theft from Vehicle 602
Sexual Offense 111
   Sexual Assault 45
   Other Sexual Offense 66
Assault 567
   Assault with Deadly Weapon 2
   Assault 565
Theft 1529
Robbery 63

Screenshot 2015-06-27 at 1.09.38 PM

Screenshot 2015-06-27 at 1.15.41 PM

Close-up within a few blocks. One block right of State Street and 2 and a half blocks south from the Leonardo is where I live. The T is 7-11 theft. The A and V right above it is here. A homeless guy was sleeping in the bushes here, the resident manager told him to leave…and he punched her in the face. The multiple pages icon means there was more than one incident. The one on my block was for 2 larcenies.

You can look up your city on CrimeReports.com

Nice around here, huh? All week, my street between Washington Park and the Leonardo, the library and over to the cops on 300, has been blocked off. It’s the Utah Arts Festival. Good thing I don’t need to get on TRAX. Can’t get there from here without going way out of my way.  The closest TRAX station is on 400, across from the Library. Arts festivals are way more expensive than my means.

I am being tortured as I type….I have the TV on BBQ U….and I just looked at the street food offered at the festival. I haven’t shopped in a long time. And I haven’t been to FNB in weeks. It would be nice to get food already cooked……a treat I very seldom get to indulge in. And not just any old food….but good stuff that I actually picked out. I have to admit, I am tired of getting what I can get through charity like the free table, FNB and the food bank box. I am burned out on eating cheap crap full of carbs….that I don’t even like.

Which reminds me! I have new clues about my rib pain. If I am laying flat in bed, it gets way better. Sitting makes breathing difficult and standing makes the pain almost unbearable. My working theory is it has to be either from swelling of something like my liver, or new protrusion of my herniated intestines into my diaphragm/lungs. Whatever it is, I am miserable.

Is that enough grouchiness for now?


It’s not getting better


I wish I knew what “it” is. Every breath and every movement hurts my ribs. Something inside my right rib cage is pushing my ribs apart. It’s a very unpleasant feeling. I haven’t left home since Monday, when I went up to the hospital for a port flush. I hardly remember this week.


Saturday is another real, live MG support group meeting. I find myself wishing I could go to the ER and actually be helped, instead. It bums me out big-time to think I was feeling this bad last time there was a meeting. Although I enjoyed the meeting on some level, I was so out of it that I don’t remember much of that, either. It really sucks to live my life feeling so miserable, when it only takes a few hours of IVIg to make me human again.


I talked to the disability lawyer by email today. Even though I appreciate the help…..the fact that it’s needed at all really, really sucks. My doctor should be allowed to treat me as he sees fit, without me having to do legal battle. Not feeling amused. Feeling like death warmed over :-(


For thou art with me


When I woke up this morning, I seriously thought about calling 911. I could barely move or breathe. My ribs on both sides were in crushing pain. I almost passed out on the toilet. My vision was coming and going and I was swaying around uncontrollably. I wanted to barf, but I did not have enough strength. An hour later, I am only doing slightly better. My counselor will be here in a couple of hours, so it’s not a good time to call a doc. It will be interesting to see if I get better by then. I feel sooooooooooo sick :-(


I spent the whole day feeling awful. Each time I stand up, I get worse pain and am very SOB. My ribs are going nuts. As if that wasn’t bad enough, my colon to vagina fistula has been hurting almost more than I could deal with. And I am bleeding because of it :-( And….my blood sugar is really high, despite eating hardly any carbs for the last couple of days.


I sounded bad when my counselor got here. He said I improved while he was here. That’s because I LOVE TO talk…..even when my voice is broken :-) We had a fun time discussing the world’s problems. After he left, I stood up and cried. It was like morning all over again :-(


Wouldn’t you know it? My doc won’t be in the office on Friday. Only another week until my neurologist appointment. At least I know that if I get so bad that I need another IVIg….he will fight my insurance company to get it. At least he will try.


I did not take a valium last night and I don’t think I need one tonight. The hip/butt/spine still hurts, but it’s no longer mind bending pain. Now it’s just tear my hair out pain :-p


The secret to life is that God is in charge. He knows us, he loves us. The world is a mess. No matter what happens, things will work out. Eternity is going to be better than mortality. We need to do all we can do here and rely on the grace of God for the rest.



Friends and acquaintances


I just watched an MG video featuring the friends and relatives of a woman with MG. That’s when it hit me that although I know lots of people to say hi to or chit chat with, I don’t have any deep-down in-person friends any more. I miss having someone to go on adventures with, someone to help and be needed by, someone to share the good and the bad. I have lots of someones to share bits and pieces, but that’s it.

There are all sorts of personalities in this building. I know I am being a snot when I say this, but only a handful of people are reasonably intelligent. I most enjoyed my neighbor that just moved because she wasn’t a fluff brain. Some people are fantastic because of their empathy, some for their knowledge, some because they are funny. A large mass of humanity here is into smoking, drinking, drugging and vicious gossip. Those are the ones I don’t really want to know. There is also a large subset of people with mental illness. I can be polite to just about anyone at a surface level. Not so easy if I am with them for more than a few minutes at a time.


I keep thinking what would Jesus do? He would be a lot more patient than I am! I would help anyone here in times of trouble or need, but I don’t want to be involved with them any more than necessary. I don’t know how the manager can deal with people ALL the time.

I have been thinking a lot about how I got to be who I am. My mom was a good mother when I was very young. I have no idea how old I was when she went from social drinker to alcoholic. My father was always mean to me. He liked to scream at and beat me. He seemed to enjoy both that and my tears. I coped by being a loner and spending as much time as possible either outside, at my grandparent’s or involved with stuff at school or in religious organizations other that the one I grew up in.

Since I tended toward being on the spectrum, people were always a mystery to me. I spent most of my youth observing rather than talking. I read books and watched TV to try to figure out how people should act. Books were my life line. I could escape my circumstances by reading. When I was young, the dictionary and the encyclopedias were my best friends. I used to beg my mother to read the Campbell’s soup labels as I ate :-)

My family was very dysfunctional. My mother drank and my father raged. Each kid experienced family life differently and coped in their own ways. I hardly even remember my sister until I went off for college. I will never forget being soooooo touched when she sent me a penny to pay for things at college :-) The only sane way to deal with my family was to disengage with it as much as possible.

That strategy has served me well throughout life. When things get tough…..run away and go camping! The woods and pets aren’t as confusing as people. There are laws of nature. Cats and dogs are more predictable and affectionate than humans.

All of my life, sickness and disability keep sidelining me. It keeps me from doing many things I would rather be doing. Going camping usually makes me better both physically and mentally. If money were no object, I would get a big enough RV to accomodate my power chair and would have enough money to have a solar set-up, a quiet generator and money for gas, campgrounds and food. I could run my medical devices, charge the chair and maintain a comfortable temperature in the rig. I could escape from these low income apartment buildings full of crime, smoke and contention. Just imagine how well I could do with all that and IVIg every 3 or 4 weeks!

It’s rather painful to think about my ideal existence compared to my actual one. I suppose that is true to some extent with most people. If you have $$, you don’t have time. If you have time, you don’t have $$. Sigh…..

I am 59 years old. What can I change from the way it is now, to something more positive? I guess I am all I have to work with. Darn it! I have already spent a lifetime of deep thoughts and self-improvement projects. I am tired. I am never going to get there.


Real tired. Olive woke me up twice last night. Once I got up, I realized that my throat was both sore and very dry. I must have had my mouth wide open and was snoring, with the CPAP air going in my nose and out my mouth. I remember that happened last time I took valium. When I woke up for the day, my ribs barely moved. It hurt soooooo bad to breathe in and out. I was profoundly weak. The MG has gotten exponentially worse. Crap :-( Also….the FIRST thing I noticed was intense gout pain in my left big toe. As I came to consciousness, my blanket touching my toe was freaking painful. When I took a shower, I could feel every single drop of water on my toe :-o As the day has gone on, it has become more stiff and less acutely painful. I wish my rib pain would get better, too!

I am wondering if it’s more than rib pain. My entire right side and back is painful to touch and it goes deep. Feels like my ribs are being expanded with too much inside, between them. I started doing my best to feel all over on that side and there is a big lump :-o It’s near the bottom of my ribs, a bit more to the back than my side. What is it? Geeze! Now there’s a lump between my breast and my waist. When I take in a big breath, my left side expands, but my right side doesn’t. Not liking this at all. My diaphragm keeps getting the same sort of paralyzed cramps that started happening just before my last crisis :-(

As I was sinking into the depths of pain and despair, the senior missionary couple showed up at my apartment tonight. I almost always perk up for company and then crash extra hard afterward…..but so far, no crash. I hope I stay better. Prayers are good :-)

I showed them the ways I can make my voice work….open my droopy eye, pick up my head in my hands and the newest….bend my head down so my chin touches my chest. I left out tipping my head back. I just don’t understand why those things work. I can feel a change in my throat, but don’t know what that is. Kinda cool and creepy at the same time.

You know….the whole time my voice worked for the last few weeks, my eyes weren’t drooping. The droopy left eye and the broken voice showed up together in the last week. I would be happy if they up and took a hike.

Ohhhhh…..booger brains! I needed to walk to the kitchen and bathroom. It feels even more like something is trying to pry apart my ribs from the inside :-( I have been getting SOB since maybe Friday. Today I am so short of breath that I am gasping and heaving my chest just from a stroll to the bathroom and back. My right lung is most definitely barely moving :-( Not this again! I hope it’s no worse than my usual atelectasis.

One good thing is that I got my laundry back and today got to wear my new under garments again. I have GOT to get more pairs. My hernia is so huge that my old ones hurt to wear. Ahhhhhhh…..something feels good :-)

Ready to gnaw my leg off


Way too many of us MG folks are falling apart all at once! My voice has worked from May 26 to last weekend…..most of the time. My MG symptoms got much better once I started up Mestinon again after a SFEMG test. My eyes hardly drooped, I could get around my apartment easier than usual with the walker and I just plain wasn’t as weak all over. I was, however, in misery because of abdominal issues. Without Mestinon for a week, my gastroparesis was awful. So I had 3 weeks that were better than my usual, even though to most people, they would probably want to roll over and die if they felt like me.

Then all weekend to today, my voice had dysphonia, I had dizziness and vertigo, I got weaker and weaker, my brain got fuzzier and my hip started hurting. I just realized this is what happened to me last December. My internist guessed trochanteric bursitis and the ER thought it was ankylosing spondylitis. They did X-rays and a CT, then an MRI that showed inflammation in my spine and sacroiliac joints. No one ever followed up on that because my MG went downhill fast and then I was in crisis in the hospital. The last week of February, I had 5 IVIgs and the pain totally went away….plus I could walk and dance around! :-) So that particular pain was gone for 4 months.
I need my own cone so I don’t gnaw my left side off
Just like last time, once I got extra weak from MG, the whole hip and spine thing is back. I cannot stand long enough to fix even the simplest meal. Trying to lie down in bed brings on mind bending excruciating pain. I get very temporary relief from bringing my left knee up towards my head. This is night #2 of lying down for bed, then getting up because the pain was too much to bear. Now I remember! Last time I wanted to gnaw off my leg to make the pain stop. When they put me in the MRI tube, I was premedicated with valium. It was the first time the pain had eased up in days. My doc gave me a script for valium. I only took a few because it made my MG worse. I think it’s time to dig those pills out! Oh. My. Gosh! The pain is terrible, awful, very bad!!! I thought the vertigo was going to make me barf….but the extreme pain probably will. My whole left butt cheek is on fire :-o
I am soooooooo tired. I just want to sleep. Lord, please help me find the valium and I might as well dig out the narcotic pain pills as back-up. Dang, this hurts!
I took a Motrin and went to bed. I seriously writhed around for an hour and then resumed looking for the valium. Of course I stuck it in an oddball place. I still have 21 of the 30 prescribed back on December 10th. Now I am sitting here, sweating profusely and waiting for it to take effect. How could I have forgotten this excruciating pain???? Whoa!
I hate the way valium makes me feel weak and heavy, woozy and stupid :-( But I love the way it allows me to sleep :-) I feel wicked bad queasy this morning. Since I was awake more than half of the night, I unlocked my door, put my laundry by the door and checked the box for pest control that said I am asleep, knock loud and come in. I vaguely remember hearing the manager in here. I woke up around 11 AM to discover they locked my door when they left :-( I don’t know if the laundry lady was here and gave up. Dang it! I desperately need laundry done.
Yup, that’s what happened. Bev came to get my laundry and the door was locked. She called later and came and got it, though.
At the moment, my hip/spine/left butt cheek pain is tolerable. I know it hurts, but it’s just in the background. It is taking me all day to shake the valium blurriness. I feel drugged and stupid. Ohhhhhh…..I don’t want to hurt again tonight :-( And I REALLY don’t want to take more valium! I don’t understand why some people like it and get hooked on it. But….I never understood most chemical addictions. I do NOT like having my thinking and other senses altered.
Bummer. It’s now evening and my hip/spine/butt HURTS! My apartment smells like pigeon shit. My voice was broken all morning, but works at the moment. See….it’s not all bad!

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