Only watch this if you have a sense of humor!

haha

I got tired of the word “hell”, but this was a great video. Any woman with a rare disease can probably relate. I just love when I am in the ER and hear the docs saying stupid things like this. There are at least 7000 rare diseases. No doc is going to know them all. POTS isn’t even all that rare.

I am still seething about how I was treated at the level 1 trauma center ER. Just because that one doc said I didn’t have MG, instead of being helped, I got mocked and ridiculed. This happens ALL THE TIME to women. I know many on the internet who have been through this condescending treatment. It’s why we HATE going to the ER, no matter how sick we are.

I have dysautonomia. POTS is one form. I have other forms. My dysautonomia was made worse by West Nile Virus. Seems to be common among those of us with chronic WNV. The worst of that, for me, is gastroparesis. The redness and heat in my hands and feet is from erythromelalgia. At first I was told I had erythermalgia, but that’s just another name for the same thing. That is also a part of dysautonomia. I know, I know, most of that is too complicated for most people. Just be glad you don’t HAVE TO understand what it all means.

I have the Sunday droops

I keep having bouts of profound weakness. All I am doing is just sitting here! First the weakness creeps over me, then my heart starts pounding fast. My head hurts and I get wicked bad dizzy. Next my guts feel punched.

before

I took a pic of me this morning when I just felt plain old weak and droopy. Then I got up and cooked brunch. Eggs, onion, jalapeno, crimini mushrooms, sweet potato, avocado, ham, cheddar and some chipotle sauce.

brunchIt was good :-) But the more I chewed, the weaker I got. I could feel my eyes and mouth drooping more with each chew.

afterI thought it was pretty cool I had already taken a pic, so I had a frame of reference. It’s only the outer manifestation, though. Inside I feel way worse than I look. I get these pains between the underside of my elbow and wrist. It’s a very deep pain that makes me want to barf. It makes the veins pop out in my wrist. This pain is awful!

popping

I have no clue what causes the whole chain of events, but it happens from time to time. Then, thanks to the neuropathy that is coming back all over me, my hands and feet turn red and burn. Mostly the palms of my hand and soles of my feet. When I run cold water over the redness, it temporarily feels better.

handturningredI really, really need a haircut! I get more money on Wednesday. I think it’s time to blow some cash on tidying up. At least I could somewhat look better while falling apart :-)

I figured I had better write this in my blog so I can remember to talk to my neurologist about all this.

More on being disabled

I was playing around with the Utah SNAP (food stamp) calculator. It seems that everyone gives me a hard time about how much I get…..saying it should be more. I was shocked to discover there is a earned versus unearned income bias. Because I am on disability, I get less than what someone working would get….with the same income. Insert a zillion sighs….

http://www.uah.org/calc3.html#

short-leg

Something I keep forgetting to write down is what I have figured out about my left leg. Right after IVIg and solumedrol, I could walk without pain, but I realized my left leg is considerably shorter than my right. I have limped on that side as many years as I can remember. It’s my left knee that most needs replacement. I thought I was limping like that because my knee is so messed up. As the good meds wore off and it was harder and harder to stand upright, the trochanteric bursitis quickly came back. It was in that half and half place that I realized my weak MG muscles have a lot to do with all my pain. When the muscles aren’t holding my joints together, it puts strain on all sorts of structures. Well, duh, I limp because that leg is shorter! With my alignment all askew and my muscles not working, no wonder things hurt!

Geeze! Who now? Somebody must have gone down outside. No sooner did the fire truck get here, than they were putting the person in the ambulance. Then the 2 vehicles sat out there while a bunch of guys crammed into the ambulance and worked on the person. They were there a long time before slowly leaving. I always say that the two scariest things for me to do are take a shower or go out to the dumpster.

While I was looking out the window, a motorcycle went by with a bike on it! I never saw anything like that before. Looked it up and there are lots of cycles with bicycles out there. I guess I don’t get out enough any more.

bikecarrier

 

Oh, oh. As I was leaving for FNB, my favorite old guy was sitting by the front door. I hadn’t seen him since he went into the hospital. He was looking good, but had watched what went on outside. A new resident had fallen near the dumpster. She was supposed to go in for all sorts of joint replacement surgery soon. I guess she crumbled :-( My old guy also told me my other favorite old guy had money and things stolen from his apartment. He suspects either someone in the building or his cleaning lady :-(

Oh, my gosh! I have never seen so many people at FNB before. Fantastic weather on a weekend brought out the hordes. I was extremely blessed. I was second in line. This morning, as I made my breakfast scramble, I was being bummed that I only had a stub of cheese left, but 18 days until the next food stamps. I got a 4 pound package of cheese trimmings!!!!! Woooooohoooooooo!!!!! :-) Later, I will open the bag and freeze smaller portions.

fnb (1)Oh, the salt lamp reminds me. The lamps and bulbs have been dropping like flies the last couple of weeks. I put in 4 new lightbulbs and 2 of the bases disintegrated. A third is almost there. I guess it’s a combo of salt and heat that does-in the plastic light sockets. Guess what’s on my wish list?

socket

Well, at least I don’t have to buy all new salt lamps.

Going to get food this morning has left me wiped out the rest of the day. Thinking is like slogging through sticky, wet mud. The weather is changing. Our high was 84, then the wind whipped up and the sun was behind clouds. There aren’t many pink petals left on the tree in a straight line of sight from my comfy chair. When I came home today, it was like going through a pink blizzard.

mem

This happens to me ALL the time. Did I wash it once? Twice? Not at all?

I have been choking for a couple of hours. I figured it was from pollen. Then I realized I was 2 hours late taking Mestinon. I can picture Heather right now. She would look at me with exasperation and say something about it’s always new for me, isn’t it? Yup. Who me? I have MG? I have taken my meds every 6 hours for how many years???? My brain is very, very tired and fuzzy…..

what-is-memory

 Uh, oh….

I hope I remember to watch Women’s Conference in an hour!

https://www.lds.org/church/events/april-2015-general-conference?lang=eng

Huh? What?

mooshu

West Nile Virus made me crazy….really. I was anxious and hyper and I cried A LOT! When I started joining WNV support groups, I was relieved to discover that many of us had gone through the exact same things. WNV does weird things to the brain :-(

I don’t have excess hormones any more. Thank you menopause and hysterectomy!!! But….I can still feel chemical fluctuations and subsequent mood fluctuations NOT brought on by moods or circumstances. I wonder what’s going on now? I was looking at my blood test results online. I had forgotten how bad my anemia is and how low the oxygen in my blood. Ferritin 13 (normal 18 – 340),  Transferrin saturation 7 (normal 20-50), hemoglobin 10.2 (normal 12.1 – 15.9), hematocrit 35.3 (normal 34.3 – 46.6), oxygen content 14 (normal 17-24) It sure can’t be good for brain function :-o I don’t know if WNV issues are to blame for my recent problems, or if it’s all the bad things wrong with my body coming back with a vengeance now that IVIg has mostly worn off?

struggle

I had long, convoluted bad dreams last night. I woke up feeling very, very queasy. I think the physical chemicals cause the nightmares. I wasn’t upset about this stuff until I dreamed it. The last 2 days I felt a sort of stunned sadness out of the blue, and started crying. I wasn’t sad until the physical sensation hit me. It felt a lot like being sucker punched, then falling. I don’t like it.

Another day went by and I remember virtually nothing. It was warm out :-) The official airport high was something wimpy, in the 70’s. At the Wunderground station near me, the high was 87! I did go outside long enough to dump garbage and recycling. The leaves are popping out fast, crowding out the beautiful tree blossoms. It all happens so fast!

I watched an episode of the Food Nanny online, trying to feel inspired and suddenly capable of whipping up a month long menu using free food and $101 SNAP. Ah ha ha ha ha ha ha ha. Right.

http://www.byutv.org/watch/9a6353e3-aea9-44a0-8d04-7781b367ae05/the-food-nanny-money-money-money

I don’t like going out to the common areas any more. Everybody makes a big deal of me not being able to talk again and being back in the wheelchair. They all want me to explain to them why I can’t get more IVIg treatments. Is there a good answer to that???

notme

Nice day for the park

I waited until the last minute to decide if I was strong enough to go to the park for FNB. Weird day. Most of the places they went to glean food had no donations. I overheard a discussion about it all. The local FNB does not have 501c3 charity status, so some places no longer want to give them food. The stores want to be able to write off their donations on their taxes. Of course this comes at a time when there are more and more people waiting in line for food. Today there were 3 new women in wheelchairs. Always lots of new people lately.

fnb

I was at the wrong end of the line, so didn’t get much. I was hoping for some zucchinis. Nope….but 4 bags of sweet potato chips. I used the half rotten onion in my breakfast eggs, though. You can see why it’s hard to stay low carb off donations.

fenceddillsOn the way home from FNB, I checked out the flowers.

fieldofviolets

daffbed

daffsalongthefence

2tulips

hippyhaven

violets

brighthyacinths

redtulips (1)

kokokitchenSomeday I want to go eat here. I want to see what it looks like inside. It’s only a couple of blocks away. There was another MG meeting tonight….at an expensive restaurant an hour and a half from me by public transportation. Too much money, too much strength required and too many hours travel to and fro. I vote for this place next time! :-)

I can’t remember most of today….in a scary sort of way! What did I do? I guess all I remember is the pain part. To go with the quivers and muscle spasms all over my body, I added a new one today. Along with fasciculations on my face, there are rippling muscles and quivering muscles….all 3 sorts happening together. I wished I had my camera with me while I was at the mirror.

The peripheral neuropathy from a couple of years ago is coming back. My arms, hands, legs and feet are getting lots of numbness, tingling and prickling. That makes me want to itch. I keep waking up from my legs moving all around the bed in my sleep. I constantly need to move them while awake to stop the worst of the tingling.

My guts are misbehaving. I definitely look more than 9 months pregnant. While I am cutting up vegetables, I accidentally brush my belly against the counter. That causes searing pain in the hernia, then my intestines stiffen up and try to do that rolling thing. Later, I had a fever and was hottest there. There were a few times I wondered if I would have to go to the ER.

The other weird thing is that I got a splinter in my right pinky finger, the same one that just had gout. Tonight BOTH hands are swollen and the owie arthritis is back. That’s just weird.

The dizziness comes and goes, but mostly stays. Lots of ringing in my ears, then it’s as if someone has the volume control for the universe and rapidly turns it off and on. Then my head does the whooooooooooooshing. Doing anything at all makes me SOB. When I quick sit back down, I can see my heart beat in my eyes….like the blinking of a microwave or other LED light.

Well, I know what my body was doing today, but I don’t remember where my brain was!

name-tag

Why can’t more people be like Temple Grandin?

Grandin-human

I was going to watch something in particular on TV, but watched a few minutes of Nature, instead. The voice in the background was matter of fact, with no BS. Then at some point, I looked up and there was Temple Grandin talking about animal’s feelings. She says what she means and means what she says. I don’t think she worries too much about how other people perceive her. I am sure she cares on some level, but it doesn’t change her. She is good at what she does, because she puts herself in the cow’s or other animal’s place.

grandincows

It was a good TV program about animals of different species being friends. I think about friends often. Why do we want them? How do we get them? How long do we keep them? Why are some people so clingy? Why are others so aloof?  I love getting to know people. I am always trying to figure out what motivates them to do the things they do. I especially like swapping ideas and delving into intellectual or spiritual stuff. Sometimes it’s hard to find people who actually think!

Quotation-Temple-Grandin

I loathe meaningless banter. Went out to get my mail Tuesday and there was my tormenter, the stomper. If I had to listen to her more than 2 minutes, it would be more pleasant to commit suppuku. Nothing that comes out of her mouth is real or important. Any random dog or cat expresses more intelligence and true emotion. I am in some phase right now where that gets on my nerves more than usual! Not very nice of me, but life is too short to suffer idiots.

Here’s Olive snoozing through my typing.

Olive (1)

Olive likes the pink chicken on the floor. My neighbor, Jack, gave it to me. When it’s hit or bounced, a light inside flashes. As I write this time, Olive is curled up on the bed. Any of us with pets know they have personalities, feelings, a sense of humor, empathy, love, and on and on. I cannot say that for all the people I know.

guardiancat

I was too dizzy and queasy to sit here another second, so crawled into bed. Olive and I napped for 4 hours. I woke up feeling somewhat better :-) I am still tired, even after sleep.

Olivebymyhead

*******

This document about myasthenia gravis was just posted on one of my groups. According to this, I would ALWAYS be in a flare and just went through MG crisis.

What is Myasthenic Crisis?

Myasthenic crisis happens when the respiratory muscles get too weak to move enough air in and out of the lungs. The patient is unable to breathe and a machine (ventilator) is needed to help breathe for the patient. The ventilator may do this through a tube into the airway (endotracheal intubation) or a tight-fitting mask on the face (Bi-PAP).

Myasthenic crisis involves only the respiratory muscles so it is different from an MG flare (exacerbation). An MG flare is worsening of some or all muscles throughout the body, not just the muscles used for breathing. MG flares vary from patient to patient but may include worsened double vision, increased arm weakness, falling, unsteady walking, difficulty swallowing and having a hard time swallowing.

Many muscles throughout the body may weaken during an MG exacerbation but myasthenic crisis refers specifically to severe, life-threatening weakness of respiratory muscles.

Certain things are known to trigger (cause) myasthenic crisis. These include:

Medications-

high doses of steroids, narcotics, certain antibiotics

certain heart/blood pressure medications, general anesthesia

Illness- especially fever, pneumonia and lung infections

Choking - inhaling food/liquid into the lungs can lead to aspiration pneumonia

Stress from trauma or surgery

Stopping medications used to treat MG

Myasthenic crisis can develop slowly or quickly. It is important for patients to get medical care right away when symptoms of myasthenic crisis develop.

A patient may be admitted to the hospital with a diagnosis of myasthenic crisis even though a ventilator is not needed yet. This is because aggressive treatment is needed in order to prevent full myasthenic crisis and keep the patient breathing without a machine.

How can I tell if I am having myasthenic crisis?

Sometimes it is hard to tell if shortness of breath is due to anxiety or MG muscle weakness. Patients can do some simple assessments to check respiratory function at home. Signs that breathing function is worsening include:

Cannot lay flat in bed without feeling short of breath or gasping for air

Rapid shallow breathing (especially more than 25 breaths/minute)

Having to pause in the middle of a sentence to take a breath

Weak cough, especially when mucus/saliva cannot be cleared from the throat

The muscles between the ribs and around the neck pull in during breathing

Cannot count out loud past 20 after a full breath of air

Sweating even when the room is not too warm

Waking up frequently during the night gasping for air

Feeling restless, agitated, drowsy or confused

Breathing worsens even after taking MG medications

The chest wall moves inward instead of expanding when air is inhaled

Feeling too tired to keep breathing

PATIENTS SHOULD SEEK IMMEDIATE MEDICAL HELP WHEN FEELING SHORT

OF BREATH WITH THE WARNING SIGNS LISTED ABOVE

Important note about pulse oximeters (pulse ox)

Pulse oximeters are often used by healthcare professionals. Patients can also buy small monitors for home use. A pulse oximetry result <90% indicates that the patient’s breathing is impaired. Pulse oximetry is NOT a good test for breathing function in MG patients unless the patient has lung problems (COPD, pneumonia) along with MG.

MG patients can monitor their pulse oximetry at home BUT do not assume that breathing is OK even if pulse ox is > 95%. Use the assessments above to check respiratory function instead.

 

*************

I admit, I flipped out on some nurse or tech guy who tried to put oxygen prongs in my nose while in the ER and my sats were high. I didn’t need supplemental oxygen, I needed the ABILITY to breathe! Very few people understand the difference. Sigh….and yes, sighing is an MG thing.

Ups and downs

Is it really gone? I wasn’t very dizzy today :-) My head never made any whooshing noises. I had the TV on a few times. Light didn’t bother me. YIPPPPPPEEEEEEEEEEEE!!!!!! What a relief!

But….it has been replaced by almost constant muscle firing. Most of the day it was the whole thumb joint in my palm. Then it moved to my left eye. Then something I never remember feeling before. About a hand width above my ear, a muscle constantly twitched and fired on my skull. We have muscles on our skulls? It must be the temporalis muscle. I already know my eye, mouth and throat muscles get weak. Creepy place to have non-stop muscle firing and twitches.

TEMPORALIS-MUSCLEI was supposed to have a neurologist appointment this week. They called Monday morning to cancel. I was very much looking forward to being checked out for cramp fasciculation syndrome/neuromyotonia. Dang. The next appointment they could give me is in a month. Booooo hissss!

Given the choice, I would rather suffer through the buzzing, twitches, cramps, muscle firings, myoclonic jerks, etc than to be as dizzy as I was last week. All the muscle stuff makes me tired out, but at least I can think and mostly function. Better yet….I want to be all better!

There was an awkward situation today. The woman with the contagious lung infection who is getting hospice care, knocked on my door :-o I have been trying to avoid her. I don’t want what she has. She brought me a fridge magnet from her hospice company. She wanted me to be in hospice, too. I couldn’t exactly argue with her that I am not dying any time soon. She doesn’t think she is. Hospice called her family and she got all bent out of shape and says she is NOT dying! Sigh….only God knows when it will be our time. I was touched that she thought about me. Hospice is for: A life-limiting illness with an estimated life expectancy of six months or less.

I sure as heck wish I could get some help somewhere. We all got papers today saying that it’s time for the annual inspection in April. I sincerely wish I had a helper to vacuum, mop and scrub. My apartment is always fairly neat, but I have no strength for the in depth cleaning. If somebody wanted to make money, it would be a great service to offer to all of us seniors. Some people have major stress outs about inspections. I have to admit, when I sneak a peek in open doors, I am surprised at how much junk some folks harbor.

*******

I think I fell asleep in the middle of writing last night. Today I only have about half as many twitches and muscle firings, but I am dizzy. Dang it! Everything happens in waves. My strength and symptoms are like the undulations of water on the beach. No sense fighting it, it just is.

It rained a little yesterday and is supposed to rain again today. The gloominess is made better by all the birds singing spring songs and watching the blossoms swaying in the wind.

Here are some more pictures from Sunday.

sidetrees

 

phyacinth

pinkhys

prettyinpink

littles

gnarlytree

scattered

heather

aviary

moreleaves

feedingbirds

pondhabitat

 

geese

grapeforsythia

lonered

leaningforsythia

Here we go again

StompOnMG

Don’t stomp on myasthenia gravis patients!

My insurance company refuses to believe I have myasthenia gravis. I just got this note from my lawyers:

“We haven’t heard back on the appeal. They did contact us indicating that there wasn’t anyone who had diagnosed you with myasthenia gravis and we indicated that we had submitted the letter from your most recent physician who ordered the IVIG in the emergency room. We resubmitted that documentation just in case, but haven’t heard back from them since then. I would guess based on their response that they will likely deny it again…I will let you know as soon as I hear anything.”

Many years of having MG in many states, and many years of IVIg. Several well-known docs saying I have MG. My internist and neurologist here say I have MG. A hospital admission through the ER and ICU because of MG crisis, with subsequent 5 IVIgs and incredible improvement….and I don’t have an MG diagnosis?????????????? How ridiculous can this whole thing get?

question-mark

There are so many thoughts coursing through my brain. So many fantasy scenarios of what plague should befall such idiot paper pushers! I hate Utah. It’s all about money here. Poor people’s lives do not matter as much as rich people’s lives.

Now what do I do? It’s as if the last week of February never happened. The insurance company is no doubt really peeved that the new neurologist and his hospital saved my life. Profits would be so much higher without me! They want me to die….or at least go away.

MGstinks

Where else but Utah could a college drop-out governor make $150,000/year for ruining the state? The Republicans here vote down anything that helps those who are low income and/or not well connected politically. But they vote all sorts of tax breaks, grants and subsidies for themselves!

pissed-off

I took advantage!

reason

I woke up and wasn’t dizzy! Amazing :-) I kept waiting for it to hit, but it didn’t. I got ready and quick went to church. Once I was there, it was obvious WHY. I dearly wanted to take sacrament, but every song and the talks were super special and made me feel very glad to be there.

On the flip side, the pollen had my eyes crying and the stuffiness of being in a building with lots of people caused me to need my inhaler and go through 3 bandanas for blowing my nose and wiping away tears. The stupid myoclonic jerks were zapping me. At one point my neck got weak and hard to hold up, but when I scooched back a bit and put my head in the headrest, I got hit on two fronts. I started having buzzing and spasms and twitches in my muscles and I couldn’t swallow with my head back.

Lucky for me, both speakers were captivating, especially the man who talked the longest. He said he had been going through a crisis of faith. It became apparent (at least to me) that he had plenty of faith, but he didn’t give himself credit for it. He let Satan make him feel guilty and unworthy. It was the best talk I have heard since I lived near Adam-Ondi-Ahman in Missouri.

As a very imperfect person, I get real tired of hearing how perfect other people are. It’s like the first time I ever read the Young Women Personal Progress Book. I realized I couldn’t possibly ever do all that and learn all that. I sobbed a long, long time. I felt much greater encouragement by listening to a man struggling to reconnect with his faith. For me, it was much more real and from the heart.

By the time church ended, I was feeling all my muscles jittering….and I just wanted to breathe real air. TRAX pulled into the station just as I came out the door. That meant I would have to wait 20 minutes for the next train. Oh, well, I made it there by power chair, I could probably make it home, too!

Then I started taking pictures. I didn’t want to stop and go home! With rain on the way, tree blossoms will probably get washed off. The sun was still shining. Next thing I know, I was at the park. I enjoyed looking at all the people, dogs and flowers. I took about 70 pictures. My arms were trembling from the effort.

Got home and the trembling, spasming, cramping, twitching hit pretty much every spot on my body. And when I looked up, the clouds had come in and there was no more sun. Of course I forgot my sun block hat today! I can feel my skin rebelling against being unprotected. Sigh…..I never learn. But it was fun while it lasted :-)

I couldn’t stand all the skin, muscle and nerve craziness, so I went to bed. I was really confused when I woke up to light outside. I also woke up with a fever. That explains the chills before I crawled in bed.

Here are a few of today’s pictures.

rocktree

purplering

littleclump

veryblue

parkdaffs

tulipgdoup

forestviolets

fencedforsythia

orangeandred

2liplongview

newgreenleaves

fronttree

manyyellows

daffhy

whiteandgrape

fencedpink

catkinsgrassviolets

sunnydaffs

16.7 million viewers???

pity-party-cry-baby

Really? I wonder how many of them ever heard of myasthenia gravis before this show?

http://starcasm.net/archives/310181

no-fair

It’s Saturday morning and I am frustrated! My double vision is horrible. I don’t know how my brain deals with it. Everything is a double blur. Makes me very, very queasy. My emotions are all over the place. It was miraculous to be able to see clearly, talk, walk, use my arms and all that. Now I am just plain weak. Nothing works very well. Being weak causes incredible pain. My muscles don’t hold up my neck and lots of strain is put on my back when I stand. It sucks. I have moments of feeling sorrier for myself than I think I ever have before. I want my body to function like the average human being’s body does.

My neighbor just came to see if I was going to the park for free food. Nope. I am too dizzy to drive my chair and I feel like heck. Luckily I didn’t have to explain myself to her. She already knows how I feel when she looks at me. I was thinking about all the people who don’t know me, but make judgments. They think if I could walk when I got out of the hospital…I should be able to walk now. My ex-neighbor got disgusted with me yesterday when I croaked out that my voice was broken. She could not understand me. Some people take my struggles as personal attacks on them :-( Geeze. Nobody wants to be whole more than me.

I guess the hardest thing to deal with is knowing that I COULD be functional, but it’s not in the insurance company’s best financial interest.

I am, once again, oh so tired of being low income! In 2 days I spent $89.37 on groceries and only have $11.63 left to spend for the next 25 days. What I bought doesn’t look like much.

I write down the price of every single thing I buy. Many items have gone up 40 or 50 cents each just since last month! And some went up that much a couple months before. Now the Republicans want to cut food stamps…..and they want to cut Social Security. Unfortunately rent and food only cost more. What the heck? How are people like me supposed to survive?

pain

It’s a bright, sunny day, but I am in a dark place :-( I don’t know where I would be without faith in God to bring me back to the light.

light

That doesn’t mean things are easy. It does mean that I know where to look for hope.

refiners-fire

 

faith

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