Yes, it reminds me of Alien


Tonight, when the nurse got here, I was standing up. She had never seen me standing before. I loved watching her face when she saw the silhouette of my hernia through my skirt. She said it was like in the movie Alien. Yup….that’s me!

I still feel pretty yucky, but my BP, o2 saturation, temperature and brain are all doing slightly better. My kidneys do not hurt as much, I am hardly coughing and I seem a bit perkier and more with-it. It’s about time! My last Ertapenem infusion will be Thursday. I hope my all-over edema goes down once I am not taking antibiotics.

Then, if I still don’t perk up, it will be time for a Medrol dosepack. It gets really tedious to be so weak and not be able to take full breaths. I am not having fevers….but I am still having night sweats. And, my guts hurt. A lot. It’s a relief to have ANY improvement and I am hoping for more :-)


Thank goodness for TV


LDS General Conference is held every April and October. I both look forward to what will be said and how it will change me….and I dread it. Ever since West Nile Virus, it is soooooooo hard to concentrate. I hold on to the fact that as the words are spoken, they go into me and evoke thoughts and feelings. I might not feel like I am retaining much, but hope I am. Later I read the talks, bit by bit, and sometimes I watch the videos. All I can do is hope that the important parts stick. And it always astounds me how often I have to cough, blow my nose, wriggle around in pain and get up and go to the bathroom. How do people go places and sit still in a big building full of people?

I could identify with President Thomas S Monson. He started out his talk strong. He got weaker and foggier at the end. His eyes looked just like mine when I am trying to hold on and wonder if I can. I felt very bad for him. He had to be helped back to his seat. I can only begin to imagine how he felt. It’s frustrating, embarassing, scary and humbling when our bodies are weak. He was much more poised than I ever thought of being. My solution to just about everything is to burst into tears.

I have been holding off tears on my own behalf for hours. My back still hurts from the PT and my chest still hurts from the nurse. I looked at the new blow-out in my hernia. It’s happening where the surgeon put in a drain during the second operation. Makes sense….it’s a weak point. I don’t think there is any of me that doesn’t hurt. And a weird one….the middle toe on my right foot started hurting while both nurses were here last night. I didn’t say anything, but I wondered what was wrong. Well, that toe woke me up several times in the night and was excrutiatingly painful the moment I first stood up this morning. It was shiny and red, but the color is fading. What the heck? How can something so small hurt so much?

OK, conference is over for this year. I wish I could have retained more of what I heard. I tried hard to soak it in. My brain kept checking out. What I really need is a nap. The nurse called to say since last night’s infusion was so late, she wants to come at 7:30 or 8 tonight. I guess I had better try snoozing. I feel yucky. And my voice is back to being broken. And my guts are not happy.


I knew this was a disaster waiting to happen


My port was deaccessed Friday night. It got to be “naked” overnight. What a relief! I hate the darned clear square adhesive that’s like a block of tape that goes over my port when it’s being used. For a week now I have had a dangly thing on there that had to be covered with plastic wrap each time I showered.


I have to admit, I am scared that my usual nurse is going to reaccess my port. I had to tell her how to put heparin in and how to take the needle out Friday. A port is a direct line to the heart. Only certain RN’s are allowed to access them. There is strict protocol on how to clean the area. This nurse doesn’t wash her hands on regular days….she just puts gloves on….then does things like pet the cat. I wish the guy was coming back to access the port! I will have to keep an eagle eye on her.


Well, it’s 8 PM Saturday and my fears were justified. The nurse stuck a needle in my port around 5…and pulled it out. There were no more needles. She had to call a bunch of places for more supplies. Everybody was closed. She finally got someone at 5:30 who said they would be here in a hour with a 3/4 ” non-coring Huber. Ha! Just looked at the delivery paper and it did, indeed, say delivery by 6:30. It got here closer to 8:30.


The nurse stuck the needle in so it went outside of the port and I screamed REALLY loud. She dropped the needle on the floor. I told her we needed someone good at it to get the needle in. The nurse called the guy I like….who lives in Grantsville…..the town Heather drove me to when she was here. It’s a very long round trip in the rain to come patch me up.


The humongous adrenaline rush from the crazy pain, made my voice work! I feel sooooooooooo much better with adrenaline. Perhaps a doc should find out why. My eyes undrooped and it’s now easier to breathe. BUT….something is wrong with my chest. I have a large area of crushing pain from neck to belly to left shoulder.


So the guy nurse got here and he could not get the needle in, either. On the 4th needle of the night, they worked together and the darned thing was finally in the right place! It was 10:15 PM when the last nurse left. What a loooooooooong day!


I had spent most of the day watching three 2 hour sessions of General Conference and the Priesthood meeting. My brain is having a hard time processing things. Overload!


I fired the physical therapist


I usually intensely dislike home health physical therapists. Two of the PT’s I met for my wheelchair evaluations were great. For the most part, the visiting ones are, well….morons. The guy was condescending, blatantly rude and not too bright. I didn’t like him the first day and I despised him today.


If Heather were here, she would be chastising me right now for letting him come back. Sigh…. Somehow I am not forceful enough. I say something is hurting me, or is making me worse, and am either not believed, or they don’t care. I sit there, stare straight ahead and cry. Finally I said no more PT.


I repeatedly told the guy that how much I can move and do things depends on when I last took my Motrin and Mestinon or if I am on steroids or IVIg. When I am this swollen and out of breath, doing anything more than necessary is wicked painful and sets me back for days. He just didn’t get it. I tried to explain that without IVIg, I have to sit very, very still to be able to keep breathing. No matter what I explained, he gave me the standard lectures about use it or lose it. If only that were true with MG!!!!!! Every time the neuromuscular junction is used/stressed, it takes a long time to save up enough strength to do the next thing. Probably only people with MG can ever understand….but you would think a PT would TRY!


It has been more than 6 hours since he left. The lowest part of my back that has inflammation and stenosis is in screaming pain. It makes my arms and legs feel even more like dead, lead weights. Certain positions he wanted me to be in for exercise, set off the buzzing, tingling, tuning fork feeling in my legs. Now my feet are on fire with neuropathy and my hands have joined them :( Of course in the PT’s eyes, I am lazy and don’t want to try hard enough. I wish I could give him my body for a day……..a week…..forget it…..a YEAR!!! I sure would not want his as a trade-in though :-p


I looked up the average salary for a home health physical therapist. It’s around $75,000 in SLC. Wow. He sure doesn’t earn it. Even if I had no special issues, I would have found his personality difficult.


After my morning shower, I took a good look at the new bump popping out from my giant hernia. Not good :-( The skin has color changes and the bump is bigger than yesterday. A hernia like this can get pinched because it’s coming through a different layer than the big hernia is. Sometimes there are sharp pains there, sometimes it stings. The PT made it worse :-(


And I should keep track of what happened last night. I went to bed soon after 9. I burped a whole lot as soon as I got flat. Then the hiccups started. Not nice little hiccups….violent, sharp, strong hiccups. They went on for at least an hour until I blessedly fell asleep. I woke up at 1 AM soaked in sweat and in pain. Got up, took meds and went back to sleep. It did not help my temper that I had to get up at 7 to be ready for the PT at 8. What a waste of sleep and life! Can you tell I have zero respect for the guy? Pffffffttttttttt….make that negative.


So…..the nurses coddle me too much and the PT not at all. Is that like good cop, bad cop? I am a crummy patient. I totally enjoy having people to talk to and to help me…..but I hate, hate, hate people trying to play power games with me. As soon as I am supposed to shut up and do what I am told, just because someone makes an arbitrary decision, I go nutso. I loved my wound care nurse that I had for 4 months, because he was just naturally soothing and cooperative. He didn’t randomly decide to hurt me. I think some of these “caregivers” get off on power over other people when they are most vulnerable. Creeptoids!


The phone rang. It was a mysterious call from the pharmacy. They will be delivering meds in a couple of hours. That’s odd because they never call me first. I wonder what’s up? Oh, geeze….I need to go to the bank and get some cash for the pharmacy. Maybe they knew I needed to do that :-)


It’s raining here in SLC, but it’s snowing in the nearby mountains. Good thing I have hardly been eating. I don’t need to go buy groceries. Here’s hoping nothing extra bad happens to me, because I really don’t have enough strength to go to the ER. When I go in my power wheelchair, they usually let me stay in it, and not the bed. The ER beds hurt like crazy and the fluorescents make me sicker than I was to begin with. Sooooooooo tired and weak……


Home health people usually over react


Back when I lived in the NY Adirondacks, it wasn’t me who used my emergency button to call the ambulance…it was the visiting nurses. When I first moved to this place, it was the nurse and aide who liked calling 911. Around 5 PM, I got a call from my nurse who said she was stuck in traffic. My doctor’s office told her I needed to go the the ER because they think my congestive heart failure is coming back.



I have always been convinced that if “health professionals” lived in my body, they would probably live in the hospital. I have one or a dozen alarming things wrong with me almost every day of my life. When they see it first hand and take measurements, docs and nurses freak out way more than I do.


Well, the nurse finally got here. She spent the whole time being very worried about me and saying I need to go to the ER. My BP has gone up a lot…both top and bottom. It was 159/88. I feel yucky. I hurt all over in mysterious places. I didn’t cough and choke as much. Instead, my hernia and chest were worse. The cartilage right down the middle between my ribs is super owie. I look glazed over and unwell. The poor nurse was about to pop a gasket for me.


Ugh….not feeling well. Figures my next door GP doesn’t work on Fridays. It’s supposed to rain on Friday….and without unconditional Paratransit, I am not eligible for a ride to my internist’s office. It’s not going to be below 40 or above 80 degrees. When I am weak and feel like heck is when I most need a ride. Sigh…..


My insurance only has InstaCare places far away. I could go to their ER, but you know how that goes. My nurse suggested several other places, but those clinics won’t take my insurance. This is why I just stay home and take my chances.



Wednesday blues


Wednesday was an awful day for me mentally and physically. It started with a physical therapist calling early and showing up at 9 AM. The first thing he asks me is if I use the exercise equipment down the hall. I looked at him incredulously and asked if he knew what myasthenia gravis was. Everything about the guy was grating on my nerves. Then he hands me this 2 page list of exercises I need to do in 3 reps of 10. I tried to explain that without IVIg, I am struggling to just be alive, that doing too much will put me in myasthenic crisis. He then informed me that if I don’t try to do as many reps as possible, that I am, indeed, lazy. I burst into tears.

The guy tried backpedaling and I could see he was frantically looking up MG on his iPhone. What a moron :-( It seems like I go through this with most PT’s. They don’t know a thing about MG, just have their canned routines. I tried to explain that for days, I did not even have the strength to go get my mail. I could tell that no matter how much I tried to describe my situation….he didn’t have a clue. I must have “educated” and scared him enough at the end, because he took back his papers outlining exercises. Then he said he would be back Friday morning. Oh, joy.

That set the tone for the rest of the day. I wrote back and forth with my disability lawyer. She gave me wishy washy answers about why the most important medical records were not among the judge’s labeled exhibits. I am not convinced the judge even had my hospitalization reports or my good neuro’s summary of needing IVIg. The whole thing was a sham.

I spent the afternoon trying to figure out ways to leave Utah. Each idea that was promising at first, then seemed impossibly complicated and costly the more I thought about it. It’s hard to make plans with a barely functioning brain. My eyes are in perma-droop and my vision is very fuzzy.

By the time my nurse came to administer the antibiotics, I was in deep coughing mode. I think I have used 8 boxes of Kleenex since this started. Sometimes I cough up crud for hours. While the nurse was here, something popped in my hernia. I have a new smaller bump coming out from the big hernia. That horrifies me because I have seen the gross hernia pics on the internet :-( The nurse had me look at the IV tubing. When I coughed, the fluid went upwards about 6 inches. She said that wasn’t good. She said it was my BP spiking.

My BP is still going up and the edema is still getting worse. I feel like a flesh encased vessel of pain and misery. My heart beats hard, then normal, then goes nuts with patterns and skips beats. That has been true all my life. It was doing that when the nurse was listening. She acted upset.

I never once felt good yesterday. It was just a long, hard slog through pain, exhaustion and heartbreak. I went to bed before 8 PM. Got up at 3 AM to take meds and write this.


Feeling very needy


I got up late, went back to bed, slept until late afternoon, got my IV antibiotics and that was most of my day. Still coughing and choking. It’s alarming that my BP is going up each day while my oxygen keeps going down. I have very deep pitting edema all the way up my legs. My voice is more than broken. It’s so hoarse I can hardly be heard.

Still going deeper into despair about my IVIg denial and my failing health. My eyes barely open most of the day. I am wicked bad weak. I need to get the heck out of Utah. It’s depressing to know I am “not worth it” when it comes to making me functional again.

And of course I am too weak to do my laundry :-( Yes. I am feeling sorry for myself. I could use some prayers. Thank you.

I am depressed


I tried really hard not to let things get to me. They did, anyways. I feel like I have been “had” by the whole “system”. The lawyers did not answer my questions about the missing paperwork. It was suggested I come to them and have a meeting. I am too sick. I asked for emails. Silence. Maybe there still is an explanation….maybe not.


I am very sick right now. Breathing is quite the struggle. My life is coughing, choking, staring into space, using Kleenex and repeat. Today my oxygen was 89%. That cannot be helping my depression. Everything hurts…..breathing, living, existing.


i have never seen Olive so clingy and worried.


Sleep….blessed sleep!


Saturday night I slept from 11 PM to 4 AM and 5 AM to 10:30 AM. And the best part? I never once choked or coughed while in bed! :-) I also did not have drenching night sweats for the first time in “forever”. What a humongous relief!!!

I got all excited. I thought maybe I had turned a corner. But, I spent the rest of the day feeling tired, coughing and like I was watching my life from afar.


I burst into tears at 4:30 PM. I had just read over more of the packet from the judge and felt very angry and depressed. Exhibit A was from the idiot neuro that’s NOT my doc. It had more factual errors than truth. I feel powerless in this whole process. Why didn’t the judge care what all my past docs said or what MY Utah neuro said? The trial was July 27th. She signed her decision on July 29th!!!!!!!!! I don’t know if the packet contained ALL the documents from the trial. If it did, the February hospitalization for myasthenic crisis, the 5 IVIgs and the 4 page pdf from my neuro are not included. I hope I get good explanations from the Disability Law Center lawyers.


By the time the nurse got here after 5, I was struggling to breathe and kept coughing, with some serious choking. My voice was broken. My temperature was going up. She got to see it all first hand. She was shocked. On her oximeter over a few minutes, I showed 90% or below for oxygen saturation. Not good. After she left, I used my expired inhaler and choked even more. My chest and my hernia were casualties of all that coughing and choking. Dang, my muscles hurt :-(

Screenshot 2015-09-27 at 11.56.32 PM

For Utah

I don’t know what to think. Am I getting better? Worse? Both? I could have an infection and a virus. That’s my guess, and what both nurses think. Time will tell, I suppose. The infection is what started all this and the oppotunistic virus came along a couple of days after I stopped doxycycline. Apparently upper respiratory infections are rampant right now. Figures I would have both going on at the same time.


Today there was a talk on TV by this guy. He seemed very dead and calloused. He said he never cries at movies. He made that sound like a virtue. I think he’s a walled-off robot. Usually if I cry from a video, movie, TV or story, it’s because I identify with what is happening. It is my own experiences superimposed on the media that makes me cry. My memories, hopes, dreams all coming together. When I read a book, I can almost become that character, but there’s also my own internal dialogue going on. What would I do? What am I thinking? How would I feel? Pfffffttttt….crying while experiencing someone else’s story is more about ourselves than about an actor or some words pretending to be real life. Let’s be serious. Just about everything is all about ME. We each have ourselves and not always anyone else. Everything we experience is through our own senses.


Nope, I didn’t go outside tonight to tangle with the local drug dealers and thugs. I looked at the internet to see the moon. Got it here.

Screenshot 2015-09-27 at 10.28.58 PM

Latest SLC crime map for near my house


I take hours to write a little sometimes I wonder if I make sense. It’s hard getting coherent thoughts from my brain. My body is the battleground for biochemical warfare. It leaves me lacking.





Up, down, around and around


The last week of nights and mornings has been something I hope I never repeat…ever, ever again. I hope that starts with tonight. So far each night has been worst than the last. I think I came awfully darn close to being dead last night. I cough and choke to the point of starting to pass out. The middle of my chest rattles, I cough the crud up my windpipe and then I cannot get the gook out. Last night was super scary. All I could think of is this is how people with MG die. I had very little breath left….in or out. That’s when my throat started swelling. It was very obvious by looking and obvious because air was just squeaking through. Good thing I have spent most of my life practicing being calm in those situations. It took a few hours to unswell my neck in the middle of the night. I spent more time sitting in the chair than snoozing in the bed.


The first morning I coughed up blood, I was freaked. Now I cough up blood morning, noon and night. The nurses don’t seem bothered that I am coughing blood. OK. At this point, the biggest stressors are not enough sleep and difficulty breathing.


I felt yucky from morning until around 1 or 2 PM. Then suddenly my breathing was better, I did not need to run to the bathroom any more and some of the weakness went away. I went to Trader Joe’s and spent the rest of my SNAP. By the time I got home again, I was seriously dragging my butt. I put the food away and then today’s nurse showed up. She was here about an hour.


The nurse got an eye and ear full. My voice fluctuated up and down the whole time. So did my eyelids and my facial muscles. She said it’s obvious I have MG. An ironic thing is that she teaches nurses at the big hospital near the evil neuros. I often think about the dermatologist at the big hospital. He was more worried about my broken voice, butterfly rash and MG symptoms than anyone. I thought of that derm doc even more today. The nurse took a pic of my lipodermatosclerosis leg. She traced the deep line in my leg fom the bottom of the furrow to where the scar is at the top left. Now that I have seen the pic, felt the trace and talked to her, I am scared/baffled/amazed that my leg has changed so much from last year.


The scar near my knee is where calcium started growing through my skin. It was labeled scleroderma calcinosis, as part of my MCTD. Ummmmmm….now the lipodermatoclerosis has connected to the old scleroderma site. What does this mean???? Looks like a big turkey drumstick. Perhaps I need to see the dermatologist again! I looked up legs with similar configurations. This one is way worse lipodermatosclerosis than mine, but you see the same shape. I need to get the nurse to take more leg pics from farther away of my leg


Today was LDS Women’s Conference. I am glad it wasn’t any longer than an hour and a half. I liked President Dieter F. Uchtdorf’s talk….‘A Summer with Great-Aunt Rose’. With my headache and ear aches, most of the women and the young women’s choir were too high pitched for me. They made my ears feel like they were bleeding. My ears hurt so much that I don’t remember most of the conference. I need to listen to it again someday when I feel better.


For those of you that missed it, my IVIg was denied by the judge. Here’s what I wrote to my MG support group…..

Here is a paragraph from the judge’s denial of my IVIg. “Providing medical care requires a balance between giving patients the treatment they need and having the resources to pay for those treatments. Medicaid has the additional responsibility of putting tax dollars to the best use possible. This case illustrates a tension between a patient wanting treatment that has helped her in the past with the payor’s need for objective evidence of a diagnosis before the requested treatment is funded.” She listed a Utah statute that allows health care rationing.

The judge got years of medical records from my past neuros about my diagnosis and treatment, including years of IVIgs. She gave the most weight to a guy who was never my doctor….I was just sent to him for SFEMG testing. He’s the one who spent 10-15 minutes doing the SFEMG, never tested my eyes and admitted I have ocular MG….but told the judge no doctor would ever prescribe IVIg for that! She also discounted my good Utah neuro because he only gave her evidence of my myasthenic crisis, 5 emergency IVIgs in the ICU, and that I got remarkably better with the infusions….but he did not come to court. My lawyers never asked him to, they thought the 4 page pdf was pretty thorough. I have always been seronegative. The judge interpretted seronegative to mean I don’t have MG. If any of you were to read the whole report from all sides, the inaccuracies and lies from the oppositional neuro and the insurance company would make you crazy.


SFEMG…..Sensitivity: > 95% positive in generalized & ocular MG, when the test site includes facial muscles. He said he did not need to test my eyes or face. What part of me is usually noticably drooped?

Single fibre EMG can be performed in a number of muscles, but muscles around the eye, orbicularis oculi and frontalis, are the most likely to show an abnormality.   The idiot only tested my left forearm, for the shortest time possible. He was trying really hard not to diagnose my MG for the judge.

Around 10-20% of myasthenia gravis (MG) patients do not have acetylcholine receptor (AChR) antibodies (seronegative)


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