Unnaturally quiet

GrapeGateway

Gosh, I guess lots of people have left town. There have been hardly any vehicles going by my place this morning. Last night there were fireworks somewhere nearby, but I couldn’t see them. SLC sure has lots of events with fireworks. I never know about them until my whole building is reverberating, though.

MorningGlory

The weather people keep talking about snow in the mountains this weekend. Despite that, the campgrounds up there are full. Part of me is jealous. I really miss camping. But snow? No thanks!

WhiteRoses

I do a lot of daydreaming about camping. Besides the fact that I can no longer drive, the biggest problem is that I need electricity to run an oxygen concentrator and CPAP. Camping where there is electricity is expensive….and generally, not as much fun. I love the more primitive places. Sigh…..darn uncooperative body!

PrettyPurple

I was hungry this morning, so decided to do a simpler egg breakfast than usual. It was still too much for me. I was shaking like a leaf from muscle strain and was very, very short of breath. Grrrrrrrr….. And my eyes are both in the perma-droop position.

Yard

Air quality sucks today. One of the condos across the street has a wood burning fireplace. They almost always light it on holidays. The smoke keeps making me choke and wheeze. My neighbor came to my window and I could hear her lungs rattling across the room. Ack!

WendyFNB

Here I am waiting for the food to show up

Decisions, decisions….I only have half an onion left and no zukes or good stuff for my usual breakfast of eggs and veggies. I really need to go to FNB and hope for the best. Rain looks imminent, but Wunderground says we are safe until afternoon. I am soooooo darn weak! Just the thought of putting clothes on wears me out. Sigh…..what to do? Well….I went, but my neighbor chickened out.

BoingHouse

I stuck my head around the corner. They were getting the food ready at Boing!

It was looking like slim pickings. And wouldn’t you know it! I was at the end of the line again. I went through twice.

FNB23

3 summer squash, one zuke, 2 tomatoes, 1 potato, an onion, 2 apricots, a salad, paleo cookie dough and a broken cookie.

Salad

I mixed up the salad, cut out the rotten spots in the tomatoes and sat down for lunch. YUCK! It tasted like bleach and the tomatoes were too rotten :-( I threw it out. Then I tasted the cookie dough. More grossness to be thrown out. The sugar cookie crumbs were good, though :-) I am thinking that potato is going to be too green to eat, too.  Not really worth my dollar. Ick.

OrangeRoses

An interesting thing happened while in line. My voice was broken. The more I talked to this guy, the more my eyes closed. The left eye shut tight and dripped tears. In the middle of a sentence, my eyelid flew open and my voice worked. It freaked out the guy I was talking to :-) My voice still works a couple of hours later. I wish the rest of me worked. I feel yucky.

Stonecrop

Olive climbed up on the pillow my laptop was sitting on, but she didn’t get in the video tonight. Olive is still upset at me for not taking Mestinon. Who knew she was going to be such a good service cat? I hope she will still get me to take my meds on time after this week of no meds!

Olive is flipping out

Olive

I am having a hard time convincing Olive that I am NOT going to get up and take meds. Whatever it is that I do in my sleep that alerts her I need Mestinon is stressing Olive out. She stomps all over me, she bats at my CPAP tubing, she smacks my face and she meows like a crazy cat. I am so exhausted that I hardly become conscious.

CasualPoppies

BeautifulRose

Rolling over is really, really hard. I need to roll towards the side of the bed with my oxygen concentrator to turn it off. It takes me several tries to get there. Because I am not fully awake, I usually feel a bit of panic when I can’t move and it’s hard to get my breath. I hate that :-( Olive hates it worse. If I get up to pee and go right back to sleep, Olive flips out and redoubles her effort to get me to take Mestinon. I wish I knew what was different about me that makes her know I neeed meds. I would love to know what Olive is thinking :-)

DarkRoses

 

PinkRoses&Pansies

Each time I wake up, the ribs closest to my diaphragm are wicked sore. My muscles must be trying really hard to make up for the increased breathing weakness. And forget about cooking! I cannot stand very long at all. My hips and lower back are the worst, but my kneecaps just buckle and my ankles cannot hold me up. My vision is getting fuzzier and fuzzier. Trying to dry my hair or comb it, lifting my arms to brush my teeth and getting my arms up high enough to put on my glasses are all a struggle. My arms feel like they weigh a ton.

Honeysuckle

 

WhiteBush

And the stupid dizziness! I am almost always dizzy, but this is infuriating. Whether it’s my head moving, or somebody walking by, movement makes me dizzy. Not just a little dizzy, but like I am going to puke from the intensity.

Red&Purple

LittleRedRoses

Fun, huh? It reminds me of watching my stroke happen. Interesting to experience, but also crummy to be in that body during the episode. For me, one of the most interesting things is watching the progression of weakness. Taking away Mestinon is not the same as when a myasthenic crisis creeps up on me. I am weak, but not as dramatically weak. I feel like so far, I have more control. By resting and using my CPAP I can recoup a bit of my strength. When I am having a flare, it feels like there is less I can do about it.

JungleYard

Real&Fake

Breathing now is like in the movies when the walls come in to squish a person. I feel like I can barely expand my lungs enough to breathe. Another difference between lack of meds and crisis is that I know I can always pop a Mestinon and feel better. Crisis is beyond that. I just hope that lack of Mestinon does not put me into crisis!

TallYellow

I think the most annoying symptom is my difficulty swallowing my own spit. So far, I can swallow food mostly OK, but water or saliva makes me choke. Yesterday I bought myself lunch at the hospital cafeteria. I got lasagna. How hard can it be to chew lasagna??? The chewing exhausted me and made me weaker for a long time afterwards. And here is my hernia. My guts are quite swollen right now :-o

Hernia

I am weak and wimpy. Not good for much. My head hurts sooooooooooo bad! Anyplace I use muscles, those muscles are beyond fatigued. I am approaching lump status.

A long day

FNBThursday

FNB21

Taking a shower and getting dressed is an Olympic event. Going places by public transportation is exhausting. I left home at 10:30 AM and got back at 3 PM. First I went to FNB, which was a bust. All I got was 7 hot peppers and 2 limes. At this point, the lack of free food is starting to get scary. I depend on FNB for much of my meals.

WendyAtHuntsman

Darn facial droop! My eye is annoying like that. I can’t see much but my eyelashes. Mouth droop makes me look grouchy or sad. Sigh….

UrbanGarden

 I love watching this urban garden grow :-)

I took about 50 flower pics….and then my camera battery went dead. Duh! I haven’t charged it up in a long time.

Firecracker

 The first firecracker I have seen this year

I think I slept about 4 hours once I got home. When I woke up I was sooooooooo confused!

DrippingGold

 

Golden Rain Tree

Here’s my video for tonight. You can tell that my brain cells are slipping away with my strength. Olive says hi :-)

 

 

Ummmmm….ouch

YellowColumbinesRoses

mg

My head is floppy and my neck is wicked bad sore. My diaphragm feels cemented in place. My ribs ache and my legs keep giving out underneath me with no warning. My arms weigh a hundred pounds each. My forehead and eyebrows look like they are trying to slide down my face. Thinking is slower. Typing is tedious. Vision is double and blurry. Even though Mestinon does not always keep those symptoms at bay, without Mestinon feels awful! I woke up too weak to choke and felt like I was going to quit breathing and swallowing. I had to sit up for an hour and very carefully sip water until all the secretions were cleared out of my throat. Every once in awhile I get a sensation of being punched or sat on. My chest just stops in the middle of a breath. I have to consciously relax all over, when what I really want to do is panic and take in an extra big breath. My head hurts from breathing. Must be my head muscles get tense from struggling to breathe.

ShadesOfRoses

It’s rather interesting to feel the progression of weakness. I feel dull and heavy. It’s different from when I say someone turned gravity up. Now I just feel too heavy and like I am sinking. I watched a video yesterday about dry ice. Made me think about snow. Ever pour boiling hot maple syrup over fresh, fluffy snow? If the snow is not dense or packed, the hot syrup sinks out of sight. That’s how I feel…..like I am so heavy that I am sinking.

sheepnap

DarkRose

I actually have LESS pain than a usual day. I am too much of a lump to move or resist gravity. I am not trying to do things with weak muscles. I don’t have enough energy for that. It feels like it would be easy to sink into oblivion and I would hardly notiice.

meds

ColumbineBed

Wrote that and went back to bed. Slept almost 4 hours. I could easily sleep some more. I must not swallow very well in my sleep. By the time I wake up, my throat is clogged. It’s scary until the secretions are cleared. And that takes quite awhile.

MGAware

Government WateringDuringRain

This is the INS building watering the lawn while it’s raining. 

I just checked my online health portal. About 4 weeks ago, I got my port flushed at Huntsman. Today it showed the billed cost of $295.39. That’s crazy!!! It doesn’t take much in the way of supplies and it’s done in a few minutes. I just realized part of the boondoggle. If I go out of system, my insurance only pays a fraction of what’s billed. If I go to their own facility, they pay themselves at full price. This is the only place where I have lived that the hospital and doctors are owned by the same conglomeration as the insurance company. I see it as very, very corrupt.

naps

StupidGovernment

When talk is of water restrictions, watering during a time of daily storms is just ridiculous.

I needed to take out garbage and recycling, so got dressed and went out. Then I spent some time talking to folks. My voice was very broken and my eyes drooped. I spent maybe half an hour croaking along. The whole time I had periodic myoclonic jerks. These are the things that feel like sticking my finger into an electric socket. It’s intense pain, but only for a few seconds. Well, I had a monster sized myoclonic jerk and my eyes opened right up and my voice started working! People are sort of getting used to me doing strange things. I am not! That was amazing! My eyes flew open and my voice worked as if I had always been that way :-) When my eyes are especially drooped, lots of tears leak out…..not crying, just leaking. Once my eyes opened wide, that stopped, too. I sure wish I had a video of all that!

myasthenia-gravis

DowntownSky

Going without Mestinon makes it really, really hard to sit and then get up out of a chair. I weigh a bazillion pounds. And ohhhhhhhhhhhh, my guts! Mestinon helps move things along…..and now they are not moving. My intestines are popping out of my hernia and that hurts pretty bad :-(

junction

SLCLibrary

After my eyes opened and I could talk, I didn’t want to go back to my apartment! I went out for a little jaunt. While waiting on the TRAX platform, there was wind, ominous clouds and lightning. What had I got myself into? It was raining hard in the mountains and to our south. Somehow I managed to only get partly rained on…..made it look like I was wearing a polka dot shirt. It was with great relief that I made it home before the storm got worse. At least I got a few more flower pics :-)

VeryOminousSky

notdrunk

Dang! I sound inebriated in tonight’s video. I need to print out one of these cards.  http://www.myasthenia.org/LinkClick.aspx?fileticket=EGx2awFeoKo%3d&tabid=84

Wow! The power struggle continues

BeautifulYellowRoses

No time was wasted to scramble, and try to change things in their own favor. I got an early morning phone call from the neurology scheduler. The doc I was given an appointment with is suddenly not available to me. And yesterday I was told that no neuros had time to give me a SFEMG test until mid July. Golly, gee! Another miracle! I have been switched to the neurologist who is actively opposing my MG medical care…..and he can do the test next week. I believe this is called being railroaded :-(

PinkyPeony

My doctor’s office confirmed that the neuro he wanted me to see does the test. The times I talked to the scheduler before the hearing with the judge, she never said the doc did not do SFEMG and said I just had to wait for it to be worked out. Then after talking to the judge, suddenly I am not allowed to see the doc my neuro gave me a referral to, and my choices are a stranger or the doc who wants me undiagnosed. I chose the stranger. And now this morning, I had no choice and the test would happen in a week. Does this all sound fishy to you…..or what?

SnowballTree

Then today, a bunch of us in Utah talked about our experiences at the big hospital. Way too many stories about the doc I will be seeing. He just loves to undiagnose women with MG, not just me. Lots of anger in the group because of the way he acts. Just great :-(

PeekingOutPinkRoses

So….my whole future in Utah healthcare is going to depend on one guy having integrity in his testing and opinions….when he has shown he doesn’t have any…..over and over. The deck is rigged, and not in my favor. I really need an advocate to go with me for the test! Someone I can trust, someone to be a witness.

BurgundyIrisPotOWeeds

After the test….the trial. The judge could go either way, depending on how much weight she gives to my past medical records, my response to IVIg, my February hospitalization, the testimony of my witnesses, tests, etc, etc.

FNB19

I went to FNB today. I was at the end again. Not much for 3 trips through the line.

punjabeggplant

I went to Trader Joe’s after FNB. I was hungry for something already made. I knew I didn’t have the energy to do much. I looked at every possible sort of food. I talked myself out of them because it’s so much cheaper to cook from scratch. Finally I decided on Punjab eggplant at $1.99. I came home, made some Jasmine rice and steamed the foil pouch above the rice as it cooked. It felt so decadent to eat pre-made food that I bought on purpose!

TJs

I spent some time this afternoon out in the common areas. Got plenty of ribbing for my droopy eyes. Then they got better :-) I will either feel better or worse without Mestinon for a week. Should be interesting!

 

Interesting

WildWeeds

I believe this is curly dock (Rumex crispus) also called sour dock or yellow dock. It’s the biggest clump I have ever seen. This is way taller than me!

RoundFace

So swollen, so exhausted, so round. My hair is still damp from showering and I am too tired to finish getting dressed. This is right before I choked.

I started out the morning with the ability to talk well…..then I violently choked on my own saliva until I didn’t have a voice at all. I had just taken a pic of myself because I felt the ol’ MG weakness rolling over me. Yup, I guess! The choking made me so weak that my muscles are still quivering an hour later.

FencedInFlowers

This yard isn’t far from the dock. It is a very wild fenced in yard. Looks like they just let the plants do their thing. I like it :-)

After resting, I thought I could talk well enough to call my insurance company. Oh. My. Gosh! Soooooooo frustrating! Each number turns into several syllables. The guy wasn’t very good at deciphering. And the more I had to repeat, the weaker I got and the less he could understand me. My phone says we did that for more than 25 minutes. He was nice and at the end asked if he could do anything else for me. I said “Could you make me all better?” He got so flustered that it was both funny and embarrassing. Well, when you are dealing with an insurance company…..sounds like a good request to me!

PinkIris

I should keep track of all the irises I stumble upon. Pink isn’t run-of-the-mill.

IrisYellow

Pure yellow irises without any purple or striping are also rare around here.

So, around noon, I headed out. Just as I got near the TRAX stop, my train came and went. With 15 minutes until the next one. I decided to go up to the next stop for fun and excitement. People in that part of downtown are very rude :-o I was glad to get off the sidewalks and wait on the platform.

MessOPoppies

I slowly headed towards the law office and bumped into a woman I had seen before. She was eating her lunch on a patch of grass off the sidewalk. She lived my wheelchair nightmare :-( She was hit by a car while crossing State Street. She was born with cerebral palsy, so she sure didn’t need being hit! The car broke her leg and did other unpleasant things.

PurpleWithSumac

Soon it was time for me to go in for my appointment. I met with my usual woman lawyer and the new guy who had only worked there for a week. We sat at a big table in a room full of law books, with a UFO looking device for conference calls. The people opposing my IVIg infusions were numerous, plus there was the administrative law judge and at least one other person with her. The lawyer says the shear number of people against me is for intimidation. They need shear numbers to make up for their outright lies, misinformation and bullying tactics. I like to think the judge saw through them.

ColumbinesAndSumac

The funniest and best part was when the bullies told the judge that I never followed up with my neurologist since the February hospitalization, that I only got better from IVIg because I have conversion disorder, that no doctor has ever said I have MG, etc. The judge talked to me and I told her I had been waiting almost 2 months for 2 docs to work out who was going to see me. I explained that my doc had asked for a SFEMG and the neurology department has been avoiding scheduling the test. The judge wasn’t amused :-) All the bullies claimed they knew nothing about it, but would make sure the appointment was authorized.

PurpleIrisNearCar

Golly, gee! By the time I got home, there was a voicemail saying to call back and make a choice. Suddenly the doc that my neuro wanted me to see doesn’t do that test….and I have a choice between one of the bullies or a doc I never heard of. I chose the mystery man and my appointment is for mid-July. I was told the specialist neuro that my neuro wants me to see about the other neurological problems, is not an option and the referral is only for testing, not consulting. What???????? Pretty funny how things changed so fast after the phone conference :-p

GardenWithRock

I sent off a quick email to my lawyer who was equally surprised. I also left a message for my current neuro and asked what HE wants. I am so psyched that the bullies pulled conversion disorder out of their @$$. It’s the exact same thing they have told the other women who have come forward. That’s a nail in the bully’s coffin :-) Must be there’s an epidemic of conversion disorder in women who believe they have MG in Utah. Must be they forgot their ER doc told me I had Munchausen’s. They need to coordinate their stories better :-) Snicker….

FrontPorchFlowers

Thank God I took it upon myself to go to get evaluated at the mental health place!!!! Those folks are beyond disgusted with the bullies. My lawyers think it’s all a game and a farce, too. So…..that was exciting, huh? This should be a long, strange trip!

DespiteTheWeeds

Here’s a video with Olive. She’s such a……cat!

This video sums it up for today

I woke up around 1 PM….but only because a bunch of very loud sirens went by. It was sunny when I woke up! It was dark and raining when I went back to sleep this morning. I am glad I got to see some blue sky :-)

The first thing I did when I got out of bed was to open the bedroom window all the way. Instant tears. I had forgotten about my middle finger. Wow! The arthritis pain got a lot worse while I was asleep.

I have been going back and forth from wicked bad queasy to OK, all afternoon and evening. Maybe some time I will get stuck on OK. Wouldn’t that be nice :-)

NotInterested

 

Maybe if I don’t pay attention, it will go away?

OliveMeetsRose

Any cat treats involved with this?

NotTasty

That’s not the taste I was hoping for.

WhatIsThatThing

I am not amused.

WhatNow

It was fun making that video. Are you coming back?

What happened????

morning

I went to bed early, then woke up at 4 AM. I feel like I have been run over by a truck. Everything hurts. I am swollen from head to toes and in tons of pain from arthritis. It hurts like heck to breathe. I look awful. Why is it that when I get like this, the middle fingers on both hands are way more swollen and painful than the other fingers? That’s one of those life long mysteries that keeps happening. And owwwwwwwwwwwwwwww!!!!!!!!!!!!!! My head hurts soooooo bad!!!!!! The back of my head/top of my neck swelled up. All the roots of my teeth hurt.

next

I didn’t do anything weird. I didn’t eat anything weird. I was doing OK when I went to sleep. It’s as if aliens came got me and dragged me all over the galaxy, then put me back in my bed. Really, what the heck happened? The top pic is me at 4 AM, the next is me at 7. I am feeling worse and worse.

rebel

I hate the part about steroids that makes my face rounder and rounder :-( And….how come it hurts so bad to breathe today? My head pain is getting exponentially worse. Ugh….I feel awful. It’s not just MG, feels like lupus and Sjogren’s and who knows what else? My eyes are not happy. My guts hurt. I am super, super dizzy. On one hand, I have been through this a bazillion times before, but why???? Did someone flip a switch? Is there anything I can do to stop the ramping up of my symptoms? I feel extra whiny because I got to feel so much better from IVIG, then somewhat better thanks to steroids. I want to feel alive again! Instead, I am swirling down the toilet bowl of pain and disability. This sucks.

water-swirling

My legs are giving out underneath me, my arms hurt. Joints all over me are screaming in pain. I thought I might feel better after meds. Nope. Worse. And what’s up with the ringing ears? It’s hard to hear sounds around me over the ringing in my head. I have that sensation that my ears hurt so bad they are bleeding. Hate that! Sob :-(

Must. Calm. Down.

A short cry actually helped. Seemed to bring down the pressure in my head. It hurts to touch my scalp. I was trying to figure out what’s plaguing me this time. Who knows? In the past, my docs have suggested neuralgia. Maybe?

Usually….lately…..I have been getting numb right down the middle on my left side. After this morning’s intense pain, I am getting numb on the right. My face feels like a novacaine shot is wearing off. Time for a nap!

crap

 

Sleepy day

LowellMailboxesGrandRoom

I haven’t been out there today, but here’s the empty grand foyer of my apartment building.

LowellLandscaping

Near my bedroom

LowellFrontYard

Apartment building front yard

Another day of 40’s-50’s, rain, clouds and the sun is hiding. Good thing I took enough flower pictures to last me for awhile :-) I am tired from going to the store yesterday. I am feeling a nap coming on :-) My eyes don’t work. I hate it when they get this double and blurry. I get a headache from trying to compensate for the two different images hitting my brain.

MultiIris

ShortAndPretty

IrisAgainstFence

I only have the bedroom window open a few inches. But the living room window is wide open. If I am too hot at 50 degrees, what’s going to happen to me this summer? Not much to do in this non-stop rain. There’s a Living Traditions Festival going on 2 blocks away. I can hear their loudspeakers from time to time, so they are going on despite the cold rain and dreary day. Bummer! It was free to go to, but free is too expensive in this weather. This sounds like the best part :-)   http://livingtraditionsfestival.com/food-market/

PinkRoseAndSumac

BurgundyRoses

MauveRose

Since there’s nothing else to do, I made a video. I hurt all over, but I am way better than I would have imagined :-)

DroopyAndButterflyWendy

I found me in an online pic at the MG meeting. I have a serious butterfly rash going on under the stupid fluorescent lights. I was but a tiny corner in a big picture, hence the fuzzy pic when blown up. KABOOM!

CharterSchool

RoseCorner

SwanGarden

Why is the weather often bad on the 15th?

PinkRoses

I get my SNAP benefits on the 15th of each month. That means I can go hog wild and shop for food. I am most craving MEAT! Pork or beef, to be specific. I don’t know if it’s me, or what they do to chicken nowadays, but I like chicken less and less. Too much sulfur smell and taste :(

P1010556

I joined a group that talks about food. I was told over and over again to buy chicken quarters on sale because that was the best deal. What a bunch of BS. By the time I cooked the chicken, picked the meat from the bones, threw out the waste and dumped all the fat, there wasn’t much left for all that work. And I loathed it. I begrudgingly put it in my salads or in a sandwich, but I hated it :-( I ended up throwing out about a third of the meat because it was making me feel sick just to look at the container of it in the fridge. 3 chicken quarters for $2.69 and a heck of a lot of grief. Never again.

P1010542

I would rather get some thin sliced Mexican style beef shoulder clod steak for $3.99/lb with NO waste. I love it, it makes my anemia better and it’s way less work. I usually slice it into strips and it cooks real quick. Then I add the beef to other things. Very yummy :-)

P1010558

I was starving for protein last night. I used the last of my cooked bacon and fried it with half an onion. That was added to a drained can of vegetarian beans. Then I mixed in maple syrup, catsup and mustard. Not bad at all :-)

P1010562

I left my windows wide open all day. It was in the 40’s, raining, windy, dark and gloomy. Felt good to be cool :-) Then after 3 PM, the rain stopped. Pretty soon the sun came out. I took off for Smith’s and Trader Joe’s. Each month I seem to spend more and more for less and less :-( Today I got a bag at each store for a total of $65.17. Now I have $35.85 left to spend on food until June 15th.

P1010531

Just as I came out of Trader Joe’s, TRAX pulled up. I figured that rather than wait for 15 minutes for the next one, I would wheel-it home. I went down some streets I don’t think I have ever traveled before and sometimes the usual streets, but on a different side. I kept feeling there was a reason for doing this and just went with the flow. I took lots of flower pics :-) While at one house, I heard a voice and a woman came out and said she was going to cut me a flower. She gave me three :-) She was real smart about roses. I told her I was good at growing rosa rugosas and Siberian iris, but not the fancy flowers like she had. She asked my name and shook my hand. I stuck to her. She apologized and said she was decorating a big wedding cake.

P1010569

I looked up the house online. I had NO IDEA what houses around here cost. According to the internet the average priced home in that neighborhood runs around $400,000. Dang! You would have to decorate a lot of cakes to afford to live there. She was a very nice woman :-) She probably wondered what I was doing, loitering in front of her house with a camera. I am holding her roses in tonight’s video. I wish you could smell them!

P1010521

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