I had an epiphany


Few people who are doctors….especially young ones, have personally experienced chronic or acute illnesses. I have been mulling over what the neuro said to me. She kept asking what I hoped would be the outcome of my ER visit. I said I wanted to feel better. She said…but were you hoping for an MRI or CT scan, or what? I thought that was a very strange question! I was not hoping for any sort of medical torture. Really…I just wanted the numbness, weakness and swallowing problems to go away. And again she said did I want medicines or what? How do I know what I need/want? I REALLY don’t want anything but the symptoms to go poof and be gone.

While going over and over this in my feeble brain, I realized she thinks the machines and the pharmaceuticals are what I was there for. Ummmmm….no…..unless you are offering IVIg :-) But I did not go to the hospital to be treated for MG, I went there to see if I could feel better and find out what was wrong. I had not thought much deeper than that.


Why would anyone want a test, unless there was hope that the knowledge would improve things? We were looking at the world through very different lenses. Part of that is probably because she realizes that what she knows and can make better is infinitesimal compared to the pain in the world. More often, I think it’s an ego thing….as in, if a doc doesn’t know what to do, it’s my fault that I don’t feel well.

The neuro says she spent an hour talking to me the first time. I can neither agree or refute. Time was going at a different speed for me because I felt so out of it. When she came back the second time as a much less friendly person, she complained that she had spent all that time with me when there were so many patients on the floor upstairs. She had feet, she could have stopped talking. She was the one asking the bazillion questions. I think it’s bad form to care about a patient, have a change of heart and be hostile about it. Suddenly it was my fault for using hospital resources when all she thought I really needed was a good shrink. She wasn’t going to be a hero, so treating the other patients with clearer treatment paths was more satisfying.

She also pointed out that sometimes my voice worked better than others. No shit, Sherlock! The more fatigued or sick I am, the less my voice works. It improves somewhat after rest. If I have a wave of pain, dizziness or weakness, it gets instantly worse. Sometimes in the midst of totally broken speech, clear words happen. Does she think I should stay the same? MG doesn’t work that way. When I left home for the hospital, my voice still worked perfectly. Until I open my mouth, I never know what my voice is going to sound like. People here in my apartment building are very much used to it. Countless times I have started conversations with a working voice that then switched to broken and vice versa. Other times it stays solidly broken or solidly working.


I have to remind myself a million times over that myasthenia gravis is a rare disease. Most neuros never have an MG patient. I know more than most neuros because I live it. I also am active on support groups and do my fair share of studying. Any person with MG is crazy if they do not know a great deal about their condition. Otherwise, docs just love to prescribe meds on the caution or don’t give list. It happens daily on support groups, that people are suddenly weak or can’t breathe well because of a doctor.

There are very few blogs…at least that I have found….written by low income people like me. There are some by people who think they are poor, and they are, compared to the median US income…but not compared to me. Telling me I can save money by using coupons is not helpful. I usually buy basic things like eggs, meats, fruits and vegetables…..not the canned and boxed things that are cheaper with coupons. Then there are the blogs where people cook and stretch meals with carbs, carbs and more carbs. Not helpful for me. If I am going to eat carbs…they had better be darn good carbs! I do like reading Poor As Folk. I cannot always relate, but we share many of the same feelings about not having money. I liked her Thanksgiving wrap up post.



In my case, that much ($49.04) SNAP money is supposed to buy 50.5 meals…..more than half of my month’s food. Sigh….it’s tough being a very low income single. Buying most any hunk of meat is an investment for a month. I miss being able to eat decent food. I miss shopping at Aldi’s. They are the same company as Trader Joe’s…but cheaper. A few places have Costco, Aldi and TJ’s. Oooooohhh…a Wegmans would be good, too! Perfection!  But then I would really, really wish I had more to spend :-)





I grew up with Wegman’s. Whenever I would visit the Syracuse area as an adult, the stores got better and better. Going to one is like being in a city and going to different specialty stores. Oooooh! I just found this article. Looks like other people think like me. In my opinion, the only reason Publix is near the top is because so many other southern grocery stores suck. Publix is expensive. Their headquarters were in Lakeland, Florida, where I used to live. Every time I drove by, I was awed. I mostly shopped at Sam’s Club because it was close to my place…..mmmmmmmm, those rotisserie chickens :-) The rest of my food came from Mexican stores with good, cheap produce.

I need to shop again. It’s cold out there! I ran out of eggs. I like the jumbo ones at Trader Joe’s. I still have a whopping $14 in food stamps to spend. I am still hungry for turkey :-) Do you call that a one track mind?

As I hand washed under garments and a nightgown for what seems like the bazillionth time, I was a bit horrified to think that my clothes have only been washed at the laundromat once since Heather was here in September. Good thing I mostly only wear underwear and nightgowns….they are the easiest things to wash by hand. I just haven’t had enough strength to go to the laundromat. My guts keep voting against it, too.

Of course, half of my body is still numb and extra weak. I just keep trying to cheer myself up by repeating “it’s all in my head”. That ought to fix me, right?

Kiss my ass


Thanksgiving is a new day

new day

I am not sure how to feel today. I am grateful I did not have a stroke! I am also annoyed that I am still numb and weak. I am at a loss for what to do and where to go from here. Mostly I am thankful that there is a whole big world out there. There are possibilities. I need to explore those possibilities…..like how the heck to go somewhere else :-)

I keep going over and over in my head about how my medical life has unfolded. When I was younger, I knew nothing about illnesses. I naively did whatever docs said. When things happened to me, I had no clue they were significant. I went along believing that each incidence of illness was unrelated to the others. I did wonder how come more happened to me than other people. It was such a drag to have bronchitis, strep throat and tonsillitis every few weeks all through high school. It seemed like I was always coughing. Lung problems have been a constant theme in my life. I have been on oxygen a couple of decades now.

I have had double vision since I was a child. I have had intestinal problems since my 20’s. I used to be hospitalized a lot with high fevers and mystery infections. I try to examine my past through the eyes of the neuros who now say I have conversion disorder. I don’t see it that way….obviously. All these years I have been diagnosed with one autoimmune disease after another….by multiple doctors in multiple locations. Were they all fooled? Were they all wrong? Hard to get the West Nile Virus diagnosis wrong.


Thank goodness for support groups! Through hearing other people’s stories, I know that my struggles are far from unique. Many women are told their MG symptoms are all in their head. Many are labeled with conversion disorder. They then go on to find better neuros! I am glad that an eye doc diagnosed me, then a neuro confirmed MG….and that many others reconfirmed the diagnosis. It gives me the strength to make it through times like this. I still have insecurities and doubts…but I have the past to inform the future.


The old hospital I first went to in NH was imploded

I always go back to the story of when I had horrible diarrhea interspersed with spiking fevers. My doc did not know what was wrong. He offered no help. Finally I sat on his steps and refused to move until he did something. He had me sit on the toilet in his office to prove that blood was, indeed just pouring out of me. He called an ambulance and I was sent to Dartmouth-Hitchcock Hospital. They gave me narcotics and my guts stopped misbehaving. They did tests. I don’t know what kind. After a few days they decided nothing physical was wrong with me and it must be mental. They sent in the shrinks. I was discharged from the hospital 11 days later and still felt awful. I went to a country doc who charged $15 a visit. He poked my abdomen and said I needed my appendix out. When the surgeon opened me up, he found an appendix that had been burst for awhile. I had peritonitis. The big deal hospital had missed it. They almost killed me. Since then, if I don’t feel like docs get it right, I don’t trust them. It has served me well….but it has also taken a psychic toll. Docs hate uppity patients, and they really hate patients familiar with their diagnosis. Someone always has to add a snarky comment about how I know too much. Well….yup….so I don’t end up like the MG patient in cardiac arrest. Duh!!!!!

Yesterday I never ate until late last night. What prompted me to make the decision to go to the ER was my swallowing. Because I was numb only on my left side, when I swallowed coconut juice with coconut pieces, the coconut pieces got stuck on my left side. It felt awful. I tried to chase it with plain water, but that just made me choke.

I felt too icky to eat until after I had been home a few hours. I had a can of vegetable soup with canned chicken added. I did OK swallowing, but my throat was still sore from the morning choking.


As I write this, it’s 12:30 PM. I have not eaten yet, but I did drink some coconut juice with no problem :-) What I really want is a turkey dinner. Sooooo hungry for turkey! Must be the power of TV commercials and memories of Thanksgivings past. I wish I had a Trader Joe’s turkey pot pie or a grocery store TV dinner right about now. I don’t feel like cooking those pearl onions or making my 2 potatoes into mashed. I am not exactly super woman today :-p

All that hype about how awful the weather was going to be yesterday….and it mostly missed us. The high was 56. We only got snow overnight and it only stuck to leaves on the ground or parts of cars. It was just enough to tell it was snow and not frost….fractions of an inch. It would have been much more productive to wait in line for a free turkey than to go to the ER. They gave out 3000 turkeys. Mmmmmm…..


Cans thanks to long ago food bank boxes

At 1 PM, I stuck my head out in the hallway to see if the chili dinner was happening. The community room door was locked and a few people were milling around outside. Did the RA lock them out? Some woman who is new here decided she was going to bring down chili and feed people. The manager assured the hungry during the STUPID meeting, that this place was a ghost town for Thanksgiving. If last night and all the cars in the parlking lot are any indication, most of us are here. I decided to just eat.


Thanksgiving turkey vegetable soup





Nothing wrong….just crazy

I just knew it would end up like this. The young woman neuro was too nice for belief. She was concerned that I was numb and weak. She acted surprised I was no longer getting IVIg. She made it sound like she thought this was an episode due to MG, rather than a stroke. She asked a bazillion questions. I had hope that someone was actually going to help me.

By the time she came back several hours later, she acted very differently. She had gone through my records at that hospital and seen that her colleague decided I don’t have MG….that I have conversion disorder. She decided he was right. I guess they ran out of alternative diagnoses. In the past they have said I was “tired”, having a panic attack, have Munchausen’s and then conversion disorder popped up.

I pointed out that I immediately went to a psychiatrist after the Munchausen’s ER visit and the psychiatrist thought that was a ridiculous diagnosis to give me, and I don’t have it. And I said that I had continued to see my counselor for more than a year now. He submitted documents to the court saying I do not have conversion disorder. He got a degree for that stuff. I thoroughly realize this hospital will never change their tune. If I had thought my numbness today was an MG thing, I never would have gone to that hospital. At this point it would cause all sorts of problems if the bad neuro who testified against me in court was proved wrong. Can you imagine? He would be in deep doo doo.

The pharmacist had to take a pic of my Mestinon bottle before I could take a pill. He told me the neuros put a MG patient into cardiac arrest last week because they gave a guy too much IV Mestinon too fast. Any idiot can Google it.  Conversion of PO pyridostigmine:IV pyridostigmine is 30:1 That means if I am taking 30 mg of Mestinon in a pill, I would only need 1 mg of the IV version. They gave IV Mestinon to the patient at the same strength as pills :-o Makes me glad they did nothing to me!

So my discharge papers include “Understanding Functional Limb Weakness”. That’s a less controversial way to say conversion disorder. They want me to see another psychiatrist. Gladly! If I’m really crazy and don’t have MG, that means I could wake up one day and it would all be gone :-) And if that hospital’s neuros are the jerks that sooooo many people believe, yet another psychiatrist will say that I don’t have conversion disorder. Win, win….right?

You would think my past good Muscular Dystrophy Association neuros would have decided I have conversion disorder years and years ago. And how come all those eye docs could measure and show me my double vision? I could go on and on about all that. Decades of proof and treatment.

The whole thing has left me feeling more confused than ever. Who do I believe? The shrinks who say I don’t have conversion disorder….or this hospital with a finacial stake in not treating me?

On the way home, my left leg fell off my wheelchair’s foot platform. That has never ever happened to me before. I had a heck of a time getting my leg back where it belonged. When I had missed my Mestinon dose by half an hour tonight, only the left side of my tongue and face got fasciculations. Another thing that had never happened before. Am I supposed to think my body faked all this???

A very long, very frustrating day. As usual, I am beyond confused.


Ohhh! And when the neuro came back….she said she didn’t think I have droopy eyes. Really? They annoy me almost every day of my life! I lift my brows and the lids just stay drooped. Stupid fluorescent lights made me red faced.


I look like a classic MG droop. How does that happen? Somehow my brain knew it could fool everybody by faking MG? Well….everybody but the super smart doctor sleuths in Utah.

Can you even begin to imagine how confused you would be if you were me?

My oxygen went down to 73…might have been lower. I got tired of looking. The alarms were constantly going off. There were the regular obnoxious beeps and the ones that got louder and louder over time. One nurse got mad that they were going off, so he put oxygen on me. After I used the bathroom and came back to get hooked up to all the wires, another nurse acted annoyed that I wanted the nose hose back. The neuro was so invested in me having conversion disorder that when I asked about my oxygen sats, she just sputtered and said it should have been addressed by the ER staff. Ya think? Isn’t that why I was there? Sigh……


Pics of me and Olive

I have been reading stroke symptoms. Said to smile. Can’t really….but MG always makes it tough. Left face is getting number :-(


Olive has always refused being held, but she is acting clingy and is pushed up against me. She keeps meowing and extending her paw out to gently touch me.


Not looking too good. Numbness and weakness getting worse. Sigh…..


Few minutes later. Now.


I feel like I had a stroke

But if I can still write, how bad can I be? Last night I needed to make some decisions. I quickly realized I just plain couldn’t. My ability to think was compromised. Then later, I tried to answer questions on a support group, and I could not form thoughts. I felt like my brain was stuck in clouds of cotton candy. It was hard to see. I went to bed.

I fell asleep and woke up hours later. I remember nothing. At first I had no idea where I was or who I was. I got scared. At least I knew I should know those things.

I knew to feed the cat because she got on the counter and meowed. When I opened the fridge, I knew to take my morning meds. It was agonizing to think through each step of everything I did. The hardest was looking under the sink. I did not know which container was for garbage.

This knowing/not knowing is exactly what happened to me during strokes in the past. But this time I don’t feel like I had a stroke. I did not go numb down the middle. I think not being able to breathe well has taken a toll. My brain feels messed up. Both my brain and my body are oh, so slow. I needed to write this to assure myself that I still can. I talked to the cat to make sure I can talk.

Sitting in my chair, I have the feeling that I am falling. My vision keeps getting brighter, then darker. I feel really sick to my stomach. Dizzy. What the heck is going on? I think I will try going back to bed.


Sooooooo miserable…..

I woke up this morning with my rib area feeling paralyzed and in extreme pain. I just wanted to give up breathing. It hurt sooooooo bad! I have discovered if I sit very bent forward, the pain is lessened….but I am in distress. It’s making me cry. My MG is not doing well and it just crossed with poor air quality….again.

Screenshot 2015-11-24 at 9.36.44 AM

I went and looked at the air quality site. They finally changed the level to moderate risk to breathing. It sure hurts me :-( The weather forecast is for mid 50’s today. I wish this was the day they were giving away turkeys. The forecast for tomorrow is not conducive to sitting around in a line outside. I had hoped the forecast would be improved. Nope.

Screenshot 2015-11-24 at 9.28.56 AM


I rather like the 9 AM pic. The snow on the tallest mountain stands out. The trees around the city are bronzes. But the inversion is keeping the yucky air here in the valley. The air quality actually improved as the day went on! At 5 PM, the sunset is yellow. The sky looks weird…but pretty.


Another do almost nothing day. Half of it was spent struggling to breathe and the other half running to the bathroom with gut distress. I went and got my mail for fun and excitement. I meant to go outside, but I forgot. We had a high of 54. The sunset wasn’t caught on the SLC cam, so I found it on the cam for Price, Utah.


My chest hurts. My ribs hurt. My neck veins hurt. It’s hard for me to believe that most people breathe without even thinking about it. I am exhausted.


Bad air day


This picture was from 2 PM

Screenshot 2015-11-23 at 3.33.20 PM

Yesterday I was in distress pretty bad. Today is much worse. I looked outside and saw the telltale color of the sky. I went and looked it up. Yup. It’s a temperature inversion. No wonder I feel like crap :-( Particulates are in the yellow zone and carbon monoxide and nitrogen monoxide are high today.

What made me even worse is the air in this building. Last night I started to choke and went to see what was happening in the bathroom. The air was white! I think it was talcum powder. I hate the fan system!!!!!! Which reminds me. I have repeatedly asked the manager if there was some sort of fan that pulls air out of the exhaust fan pipes. I knew there was, because I could hear it when I first moved here. Then, when it stopped, my apartment would fill full of smoke. At that STUPID meeting 2 weekends ago, Joe admitted that the fans need replacing, there are 6 of them and they cost $250 each. I was livid! All of the non-smokers complain about the air quality in this building. Joe just snaps back that it’s written in our lease that we have no right to clean air. Soooo….many people here are on oxygen, have asthma, COPD, etc. We have all suffered pointlessly. I am royally pissed off. He is also penny wise and pound foolish. People like me have to leave their bathroom exhaust fans on 24/7. The increased electric bills must be significant. Utilities are included in the rent…..so it’s their loss. Grrrrrrrr……


3 PM view from the University

I have been exchanging emails with my internist. It’s a study in futility. At first I asked him to remove “Fetal malnutrition, 2,500+ grams” as my diagnosis. Somebody did….and added “stasis edema”. Sounds correct, right??? Then I got 2 emails from a nurse saying they could not find “Fetal malnutrition, 2,500+ grams”. I told them it had been removed. My doc wrote and said he would fix it at my next appointment. Today, 2 weeks after my appointment, he wrote to say he wasn’t going to take “stasis edema” down because I have it in my legs and abdomen. I wanted to scream. Does anyone have decent reading comprehension? I wasn’t complaining about that! I don’t want it on my record that I am pregnant with a malnourished fetus!!!!!!! Duh! I am almost 60 and have had a complete hysterectomy. No wonder I have a hard time with docs….are any of them really listening or reading what I say?????

I wish they would quit putting up the same old SLC courthouse bomber video. That’s the one with the alarm identical to the one here. I quit breathing and listen intently each time….thinking it’s here. No other sound on the TV sounds like it’s coming from the hallway.


I need help. I wanted to do things around the apartment today and I am just too weak. I hate myasthenia gravis! My arms and lungs sting when I use them….and I try to use my lungs all the time! :-p

Eeeeek! I got some of my blood test results. I am in stage 2 kidney disease, my hemoglobin is too low and I have too much carbon dioxide in my blood. The CO2 is usually too high in MG because of breathing problems. I am sort of surprised that my white blood cells are creeping up again. I am just under highest normal. My normal seems to be a constant infection. I pretty much always am anemic. Sigh…..

Ohhhhhh, my gosh! This ear pain is unreal. I have moments when the pain is 10 of 10. The whole world stops when it gets bad. Eeew! Now I can feel fluid trickling down the inside of my ear. I hope something let loose and that particular torture is over. By the time the trickle went down my throat, it felt bigger :-o Eeeewww times a hundred!

A couple of hours later I have realized I can now hear better and I feel better. The pressure is gone. Yes! :-) But….now my tongue is swollen and sore.



Olive is in the dog house


I have had my chromebook almost a year. Olive never tried to chew the power cord….until last night. She did it right in front of me. Sigh….

She chewed countless iPhone cords and would find them no matter how well I thought they were hidden. But she never touched the chromebook. I guess I should rejoice I had almost a year of peace. She was mad that I was paying attention to the computer and not her.

Soooo…..now I have to figure out how to buy a new cord sooner rather than later. I only have $6 in my bank account, so cannot order online. I spent ALL night long dreaming about how to deal with the chewed cord. Yes, I am obsessed with the internet. I spend all day, every day reading and writing on my computer.

This morning, I discovered that I could pinch the charging cord between my fingers and get it to work. I got good at that with the iPhone. It’s charging as I type. I don’t know how long I will be able to coax it along. If I come up missing online, you will know why.


Ahhhh….I looked up the right cord and found it for $15 on Amazon. I feel better now. I was afraid it was going to be even more. Here’s hoping pinching the cord will work until December 1st.

Another thing I need to think about is that after one year with Comcast, they raise the rate for the internet. I don’t want to pay more than I am now. If I do go back on the road again, I will need a smart phone for the apps, gps, internet, etc. StraightTalk has changed their policy. They now give 5 GB/month of data, then throttle to 2G unlimited the rest of the month….for $45. Right now, Walmart is selling Galaxy 3’s for $99. They run on 3G and the StraightTalk service uses Verizon. That sounds like the best affordable option out there. Verizon 3G has the best US coverage, even in the boonies.

Then there’s me. I had heavy night sweats on the back of my head/neck. It’s still swollen, but not as awful as before. I have to remember to brutally massage those lymph nodes! Too bad massages are not covered by insurance. I used to feel soooo much better when I got them weekly in Vermont. She did very vigorous lymph drainage. Better yet….how about there’s a way to fix it? Ohhhhhhhhhhh…..if only!

sunday drive

In my good dreams at night, I dream about driving. Just getting in a vehicle and going for a ride to see things. I am getting the same strong wanderlust I had while recovering from the big stroke in the Adirondacks. I have been in Utah 1232 days Or 3 years, 4 months, 14 days. That’s long enough!

1232 days can be converted to one of these units:

  • 106,444,800 seconds
  • 1,774,080 minutes
  • 29,568 hours
  • 1232 days
  • 176 weeks
  • 337.53% of a common year (365 days)

I just never get over the shock of all that has happened to me since I have been here, combined with the healthcare nightmares. I yearn to do something different. Doing the same thing over and over again here is insanity. My life has gotten more and more restricted. Most of my life is spent sitting in this chair, with the occasional foray to the bathroom or kitchen, then bed. I feel like I am in a cage. And to make it worse…a cage surrounded by druggies, alkies and crazy people. I miss meeting new people!!!!


Gee, at 11:25 AM, the power went out. Made me realize how much I miss silence. I always have several fans going in here….otherwise smoke hangs in the air. Dang! Another bulb bites the dust. Power outages tend to kill the salt lamp bulbs. It’s sad, the salt looks dead without light.

I am OUT of here!


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