Sobering stuff

I was too tired to get up and get a glass of water. I took my Mestinon a half hour late. I could barely lift the cup to my lips. It’s just like the first morning when I walked around the ICU floor. I can do stuff, but the weakness afterwards is profound. I need to be more careful. Sigh…..

Yes, I overdid it :-p But…how else would I ever know my limits? I decided to sit down and quietly read my discharge papers. Do these people know me? I snickered the whole way through it.

First off, seeing the words Myasthenia Gravis while talking about me, from a Utah hospital, was a shock. I have spent 3 years in Utah fighting to be acknowledged. There it was….right in front of me!

Geeze….that’s what my double vision looks like. Scary to see the second line for initial diagnosis. They were sure I had a stroke once the triage nurse glanced at me. I am glad I was coherent enough to tell them what I thought my problem was. Years ago, my first neuro told me to get a Medic Alert bracelet. The doc that both admitted and discharged me gave me a stern look and told me to get one. Sigh….

The When To Call Your Doctor box felt good to see spelled out, but brought up that old rage again. How many bazillion times have I told Utah doctors what was wrong and what I needed? I want my diagnosis tatooed to my chest….no…..on doctor’s brains!

If you add together all the hours I slept, the whole time I was in the hospital, it doesn’t even add up to ONE night’s sleep. My body is soooooooo tired. I will feel a lot better after a night’s sleep in my own nice quiet bedroom, in my unmoving bed, with no one to poke me, prod me, torture me ALL night long! I am excited to see how I feel after some decent sleep 🙂

I am home!

I look really different, don’t I? When I saw myself in my own mirror, I was AMAZED! I got less than 3 feet into the front door of my apartment building and was surrounded by people hugging and kissing me and asking what the heck happened to me? I unbuckled my wheelchair seatbelt, bolted out of the seat and started dancing around. I wish I had pics of people’s faces. It was priceless.

I told them this is what $100,000 of good drugs will do! 🙂 Nobody here has ever seen me well. Most people go to the hospital and come home looking like heck. I go to ICU and come home bouncing around 🙂

Dang! I wish I had a movie of my homecoming. It was totally cool!

Then I came into my apartment. Olive was sooooooooo happy! 🙂 She has been meowing and talking and rubbing all over me. Here she is looking at me skeptically. She didn’t know what to think when I started walking all over the apartment! I wonder what she does think? I disappear for 5 days and come home with a whole new vibe. Olive has never seen me energetic.

Whooooooooo hoooooooooooo!!!!!!!!!!!!!

 

Long day….seems like several!

Where to start? Wednesday night I was given a blow up bed. It’s one of the stupidest things I have ever seen or heard. In 2013, when I was at Huntsman, they had me in a horrid blow-up bed that hurt like heck to get in and out of. The one this time had a giant blower motor on the floor. Seriously, it made more noise that a propeller plane. I was given ear plugs with the bed. It was still very, very loud. If I was lucky, I might have slept a whole 4 hours.

I spent the morning begging for a shower. It was my first one since I have been here. Ewwwwwww! Then I was whisked to a new room. I told the nice guy nurse that I would rather sleep on the floor than the same bed for another night. He got me a real one that makes NO noise. It took a long time to get my IVIg. This is a mostly surgical floor and wow…..it’s busy! I feel bad for the harried nurses and their assistants.

Ohhhhh…..let me go back. On Wednesday I had a nice, but ditzy nurse. She decided my infusion was too slow and doubled the infusion rate. I had what must have been the worst migraine of my life. The roots of my teeth were in agony. The nurse ran her finger along my jawline and I at first jumped, then almost fainted from the pain. She got me a hot, wet towel for my head and an ice pack for behind my neck. Every shred of light or bit of noise was excruciating. THEN they turned the bed on 😮 Last time my head hurt THAT bad, it turned into aseptic meningitis. When I woke up at 2:30 AM, the nylon bed was soaked in sweat and most of my head pain was gone! I was surprised.

Today they ran the first half a bottle at 50, then never went past 100. It takes a loooooooong time for my infusion at that rate. It got done at 10 PM. Around 6 or 7 I had a pressure headache. I used to get those a lot in Vermont. The only thing that relieves them is pounding myself on the head. I saw people walk by and stare, but no way, no how, was I going to stop. After more than an hour, I had it mostly pounded into oblivion. Those are the headaches that always got better with a spinal tap.

Today I have had all nice nurses and aides. Yesterday I got some that could ONLY be described as crazy bitches 😦 Of course maybe the monster migraine didn’t help their popularity from my point of view. I can be a fairly nice person….until pushed. When one of the aides started screaming at me, I banned her from my room. Why did her bad day have to collide with my migraine??? I hadn’t even done anything. She had never met me and came in yelling. I heard her boss rip her a new one. Sigh…..

Most of today’s people were so much fun that they totally made up for the crazies. I saw lots of specialized hospital people. I have mentioned before that when my voice is broken, people equate that with having a low IQ. I get treated TOTALLY differently when my voice works. When I got to the ER, they didn’t know what to make of me. The triage nurse told everyone I was having a stroke. On my way to the hospital, the left side of my body, right down the middle, had become numb. I could not move that side of my mouth or tongue and that eye was mostly shut. I told the ER nurse I thought it was just MG, but in the past I have had TIA’s and strokes….it just didn’t feel like them. They did a CT of my head and x-ray of my lungs.

I was right across from the doctor’s station. I could hear everything said. Neither doc could remember much of anything they had ever learned about MG and were kind of freaking out that here I was to deal with. Luckily the neuro’s office really did make my records available to them. Nobody said I didn’t have MG, it was all in my head, or that I had Munchausen’s. At least that was in my favor 🙂 My head was very swollen up and very red. That concerned them a whole lot. Remember the salivary glands at home?

When the nurse accessed my port and injected saline, the salivary gland where the jaw moves, but more into the neck, instantly swelled up and got HOT. I gave the nurse a scared face and said something was wrong. I pushed on the throbbing spot on my neck. My eye opened, my voice almost worked and something flew from the side of my mouth, to my tongue. It was about the size of a pepper seed. The docs much later decided it was a salivary stone. What the heck did that voice doc do to me last Wednesday? He woke up something in all my salivary glands!

Yesterday my voice would sometimes revert back to dysphonia when I was weak. Today it worked all day 🙂 A woman came in to give me a cognitive assessment. Some of it was corny, some fun and the backwards stuff was just plain annoying and made my head want to explode. The woman assessing me said nobody had ever done it as fast as me. I told her that was thanks to all the solumedrol and IVIg in me. If I had been given the test on Tuesday, I would have failed miserably. I felt very exuberant and excited to have found some of my missing brain cells 🙂

Over and over, each new nurse tells me she has read my chart and can’t believe it 🙂 My health problems and my quick recoveries tend to do that to people. I am still miffed that I had to slog through the last 3 years without IVIg! Sigh….. My neuro could not stop smiling about my progress. I love the old guy doc here who is the hospitalist. He is never quite sure what to think of me. Even he hasn’t seen many people transform like I have.

All along they have been giving me heparin shots so I don’t get blood clots. Tonight my belly wound was itchy. I absentmindedly itched it. Blood gushed out and then I remembered I was on anticoagulants. Sigh…. A nurse had to go get some special tape and squishy Vaseline dressings and put it on my belly wound. Now it itches worse! 😮

I wish I could remember all the evaluations and consultations I had today. One woman was trying to get me to go to a rehab center after here. I told her no way in heck! The cancer hospital tried that nightmare with me. I said I would be happy to do physical therapy rehab at my apartment or as an outpatient. I cannot stand being a captive here any longer than necessary. I flunk being docile and compliant. Heck, I wouldn’t be alive today if that was my personality.

My nurse at the moment is from Ethiopia. She is the funnest one yet. We have a mutual admiration thing going on. Her sister works at the Blue Nile, an Ethiopian restaurant right near my apartment. I told her I always wanted to go there, but the front door has a step and is not handicap accessible. She had never thought of that before. Sadly, neither have most people about public and semi-public places.

In half an hour, I will have been up 24 hours straight. I need to tone down my steroid high and try to sleep. Two more days of IVIg’s yet to go…..

 

Hospital is for treatment AND torture

First off, not sure how much I can write at the moment. I am all quivery from a breathing treatment I just got. The nurse “didn’t want to wake me up” to give me a Mestinon. It was 3 hours late. I aspirated water, choked a lot, coughed crud out of my lungs and had to call for a breathing treatment. When it was all over, as politely as I could, I explained to the nurse why timing is so important with Mestinon. Sigh…..

Here is what I just wrote to my lawyers. I have a lot to say here to catch people up on me, but this will have to be good for now.

Sorry. There was no internet access in ICU. I just went through a choking incident because the nurse was 3 hours late giving me my Mestinon 😦 I had to get a breathing treatment, so now I am hyper and AWAKE! I missed the computer. 

YES!!!!! I still need to appeal. The doc says they probably still will not authorize IVIg. 

I became a new person after the first IVIg 🙂 I could walk, talk, see, breathe, taste, smell. A whole new world 🙂 I had a 700 vital capacity in the ER and after IVIg, I was 2700! I was woken up at 3:30 AM by a nurse, the first night. I started talking to her in a perfect voice! It was amazing. Then I stood up and walked to the bathroom! No walker, no shuffling, not stooped over! Around maybe 10 AM, I was standing in my doorway, looking around. The nurse asked if I wanted to walk around the hallway. I briskly walked around the ICU block!!!!! It has been 3 years since I could do that. Walking felt funny, I need to retrain my muscles. When I got back to my room, my voice quit working and I got back all the symptoms from the day before, but milder. After resting two hours, I was fine again. 

It is soooooo cool to see how effective IVIg is, then scary to see how I can go back to that awful place. In the last couple of days I have gone through extreme joy and raging anger. It was AMAZING that in 12 hours I went from half dead to a functioning person! Then I got REALLY, REALLY pissed that in 12 hours I was better. Three years of hell and misery because of the idiot, egotistical neuro and the greedy insurance company!!!!!!!!! It is sure a rollercoaster of emotions. I am getting lots of steroids as a pretreatment for each day”s IVIg. Sort of feels like permanent PMS. That doesn’t help my rollercoaster emotions.

You cannot even begin to imagine the physical difference that happened in 12 hours. I heard lots of docs and nurses talking about how abrupt and incredible the change has been 🙂 Most have never seen anything like it. Feels GREAT!!!!!!!!

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

I am scheduled to get 5 straight days of IVIg here in the hospital. That’s called a loading dose. I haven’t had that since my very first IVIg. The first one was great. The second one they decided to up the rate of infusion….without telling me. I had a whopper of a migraine from it. Like having WNV all over again 😦 The migraine caused me to revert back to a broken voice and a bit more weakness. In a sick kind of way, it’s fascinating to see and feel how everything affects me. I am looking forward to be loaded up with IVIg and get the heck away from the hospital! The manager and neighbors are hanging out with and taking care of Olive 🙂

I am sooooooooooo grateful for this hospital. They have their flaws, but are light years better than the place they told me I had Munchausen’s. All the people here are aghast at the treatment I got there. Even though I was in tough shape when I got here, I have been worse when at the big hospital. What a difference a good neuro makes! The idiot one kept telling the ER I did NOT have MG. This neuro told this ER I did. Common sense, tests, people”s own eyes aren’t enough. It’s scary that a bad doc can kill you!

God has been keeping me around. It’s constantly amazing to me what I live through. The first night in the hospital, the LDS senior missionaries came to see me. While they were there, a bag of IVIg bottles were brought in. Amazing to see after all I have been through! I found out WHY I got IVIg this time…..the deeper story. My bishop had asked me if I could keep track of Visiting Teaching in my ward. I said sure, I could do it by email, but not by phone, because few people can understand me and most hang up. I thought about that A LOT. God never calls people without helping them do their job. I sobbed when the missionaries told me that on Sunday, I had been called and sustained to do that job. It all became crystal clear. Lots of lessons here. God always has a plan 🙂

I am in the ER

Doc says my vital capacity is 700 and that’s bad. They are going to admit me and give me IVIg. I will believe it when it’s in my veins! Feeling horrible 😦

I could use some extra prayers

It’s absolutely an infection. My blood sugar has soared. My myasthenia gravis is trying to put me in crisis. I am very SOB. It has been hard just to sit in a chair. I am incredibly weak. Can barely lift my arms and legs. My eyes are drooped. I feel like I am fading away. My consciousness is loopy. The double vision is worse than it has been in weeks. Sooooooooo weak! I have twitches and spasms EVERYWHERE. I don’t think it’s a very good sign that my eye is both drooping AND rolling back in my head 😦

Not again….

Soon after I wrote the last blog post, I crawled back in bed. I slept about 5 hours. The whole time I was freezing. The chills just wouldn’t stop. I kept waking up and finding that I was hugging myself so hard that my hands and arms were numb. Brrrrrrr…….

I finally had to get up when the killer thigh cramps started. Once I sat up, I was instantly even more miserable 😦 My lungs were stinging, my left knee swollen, my head oh, so sore. My gout hand was a claw again. That awful hip bursitis was back! I quick put on more clothes and turned up the heat. After awhile, of course, I was burning up and sweating like crazy. I had to keep pouring cold water on me.

I have an infection. Now the question is where? The salivary glands? The bladder to colon fistula? My lungs? They are all acting up. I HATE the stupid chills/fever thing 😦 Now I feel very yucky.

I was bad. I slept through the MANDATORY apartment meeting. Tough luck. There was no way I was in any shape to be awake, take a shower, get dressed and sit in a room full of people. I think the meetings are ridiculous. Just write it on a piece of paper and spare me the drama.

I joined a group for neuromyotonia. Right away I met a woman with MG who has the same droopy face, cramps, twitches, etc. It’s both scary and comforting to find out it’s not just me. I also joined a gout group. I am sure not the only one who has had unbelievable pain from that. Why do I have to have “everything”???? If you don’t have health issues, you can thank me. I got yours!

I hope I feel well enough to go get my mail tomorrow. I rarely get anything interesting, but you never know!

There was snow up on the benches when I woke up this morning. By the time I woke up this afternoon, it was all gone. I hear there’s a bit more snow in the higher mountains. Nothing here. Glad we are not real cold and snowy like so much of the country!

Oh, geeze, like snapping a finger, I just went from burning up, back to chills. My head hurts soooooooo bad! Gaaaaaaaaaaaaahhhhhhhhhhhhhhh!!!!!!!!!!!!!

Oh, oh, the fire truck and ambulance were just here. Who now?

 

Was there life before the internet and Google?

When I first got ill with one thing after another, I didn’t know how to find out more. I went for years just doing whatever doctors told me to do. As it started to sink in that I had lots of weird medical problems, I would go to the library or read obscure and boring stuff at the independent living center. When I joined a real, live lupus support group in Vermont, it changed my life. There were people just like me! That’s when I started buying specialized books. I bought one through the support group on lupus by Dr DJ Wallace. Wow! A whole book about me!

Then, as the years went on, the internet came along. It cost me $5/hour to surf, but it again opened up a whole new world. It was pretty darn exciting when AOL started unlimited dial up internet. There I was, in my underground house, back in the woods, but connected to the whole world instantly. It has come a long way since then. There are LOTS OF resources. Medical journals, organizations, support groups and ebooks, among others. No longer do I have to pull out a book and try to figure out the body atlas. If I get a funny pill, I just google the imprint. When a doctor tells me I have xyz and here, take this and I will see you in 6 months, I am no longer left wondering what the heck is going on. I can LOOK IT UP!

My doc finally emailed me at 11 last night. Of course he either got a garbled message from the secretary or interpreted it his own way. He thought I was complaining of pain in my larynx. Nope. I explained that under my tongue and under my chin was extremely painful and swollen. More swollen on the right, but on both sides. The underside of my tongue was wicked owie and the roots of my teeth hurt and my ears ached. He didn’t write back 😦 The pain was too intense to go to sleep.

I started Googling. What was under the tongue? I found out it was called the submandibular salivary gland. I typed in that and some of my symptoms. Many were related to Sjogren’s, which I have. I was starting to vaguely remember this stuff from before. I started trying things. One page suggested massage. That made it hurt a bit less. Another suggestion said to suck on a sour lemon candy. I remembered that a long time ago I had gotten a tin of grapefruit candy at FNB. It was in my messenger bag. I popped one under my tongue.

OH MY GOSH!!!!!! I felt like I was drowning in spit. When the candy was gone, I massaged under my chin and along my jaw line. There were a couple more squirts of saliva. I was astounded! In a matter of minutes, the swollenness under my chin was almost gone! The excruciating pain was barely a pain at all. But then I started aspirating saliva and choking. I was wondering how to turn it off! After maybe half an hour, it slowed. It was easier to fix a gland than a muscle! Yes!

I went to bed and slept. Ahhhhhhhhhh…… When I woke up, my gout hand was stuck in a claw and the right side, under my chin was more swollen and tender. I massaged both. Now all I have to do is imagine I am sucking on a sour candy and I start salivating. That takes down the pressure. I hope that’s all I need to do until I go back to the ENT’s office for my speech therapy. Oh, and in the email, he said the name of the grant paying for therapy. I looked it up. Some rich people left grants and scholarships for school and treatment of people being studied. NIfty 🙂

I feel yucky, but better than yesterday’s yucky. My butterfly rash is still red. I still have a slight fever. But….my belly wound is way better 🙂 I am loving this aloe goop. It has healed more in a few days than I have in months.

Neuromyotonia and cramp-fasciculation syndrome

Thursday night, on an MG support group, we were talking about the way docs sometimes think we have ALS or MS, besides MG….because of our weird neurological symptoms. One thing lead to another and we were discussing fasciculations. I posted the video of my chin and tongue having fasciculations. Then a woman said her fasciculations were part of neuromyotonia. I almost fainted when I looked up that and related issues. It’s my missing link!

The killer cramps! Fasciculations, myoclonic jerks, my hands getting stuck like I am holding a bucket or opening a bottle, my voice problems, the vibrational, buzzing twitching of my upper arms and thighs. Wow! It was all the mystifying things that docs just lump together with my MG, but not that many other MG people have. It sure explains a bunch of ER visits! The Vermont ER nicknamed me “The Writher”.

I can’t wait to ask the voice disorder doc if he knows about this! And if I ever get a hold of my new neuro, I would love to hear what he has to say. I rarely tell docs all the things that happen to me. There aren’t enough hours in the day.

Friday morning I got a call from the voice disorders center. They applied for and got a grant to give me voice/speech therapy. The woman who called couldn’t understand me on the phone 😦 Rather awkward and frustrating. I looked up the guy I saw on Wednesday, who is going to do the therapy. He wrote a bunch of papers that are on PubMed, talking about spasmodic dysphonia and muscle tension dysphonia. Kind of scary to think my voice confused the expert. I guess I am going to be part of his studies, trying to tell the difference between SD and MTD and both together. I’m special 🙂

Turns out that dysphonia often happens to people with neuromyotonia and related disorders. I knew there HAD to be more reasons why I ended up in SLC! I am only 4 miles from the experts. The treatment for neuromyotonia and related disorders is IVIg. I already know IVIg is the only thing that really makes me better. The voice doc is supposed to call me back. I told the scheduler that my throat muscles are still hurting pretty bad after the exam on Wednesday. I will tell the guy about the underside of my tongue. It has swollen up and is darn painful 😦 My ears hurt, too.

It has been kind of gloomy today. Lots of dark clouds interspersed with bits of sun. It’s raining nearby, but not here. The highest I have seen is 50 degrees. I am sure that sounds pretty good to Vermonters 🙂

I often think about Portland, Oregon. I wanted to live near my daughter, but I think no amount of hipness could compensate for the wet gloom much of the year. I get depressed in gloomy weather. My body hates damp coolness. I have always looked for that mythical “perfect place” It would be nice to live there. Heather just took a pic of Porter in the damp coolness. The kid is sooooooooo darn cute! But the weather sucks. I am glad that this year in SLC, we have had less snow and fewer inversion days! It made it easier to live here 🙂

Well, 6 PM and no call back from either the voice guy or the neuro’s office. I am NOT impressed 😦 I have been getting more miserable by the second. Why does this always happen on a Friday? At least it’s not a long weekend! My neck is incredibly tender and swollen. So is my tongue. No way do I want to eat supper. Even drinking water has been getting more painful. And….turning my neck to the left is super owie. Every hour I can turn it a little less. What the heck did that guy do to me? 😦  😦  😦 At the time, I was taken aback by how brutal he was. Now I am thinking very not nice thoughts!

I haven’t left my apartment since Thursday morning when I went to FNB. I don’t even care if I got mail. And you know what else? My whole gout hand has been swelling all day. Dang it!!!!!!! I don’t feel well at all……

Another beautiful day!

The sky was very blue….except where there were random chemtrail x’s scattered around. I enjoyed sitting in the park and waiting for FNB to set up. They were late today, but it was an awesome day to wait 🙂

On the way to the park, I saw a fence line covered in blooming violets. Now I wish I had stopped and taken their picture! The grass is just starting to green up. If you look at the trees across the street, you can see the color from swollen buds. We have the 4 letter word in the forecast. SNOW. I wonder if there will be any down here in the valley? Today we had mid-60’s.

Not a large volume of stuff up for grabs, but I was first in line, so there were great choices for me 🙂 I got back in line for the second time through!

I had a spinach, turkey and berry salad for lunch, along with a slice of tomato cheese focaccia bread. I had two different kinds of cookies for dessert. I am looking forward to a banana strawberry smoothie.

I have barely moved the rest of the day. My red and shiny butterfly rash has been hot and itchy all day. I am still in significant pain from having the doc poke at my throat and under-chin muscles. He was brutal 😦 Now my neck looks lopsided.

Got an email from the disability lawyers. They are working on my IVIg approval. I told them about yesterday’s docs saying that my MG is a big problem. I called the neuro yet again. I got voicemail again. Still no call back after a week. Grrrrrr……

My hand arthritis and leftover gout pain was worse today. Those parts are missing the Indomethacin. My ears are NOT missing it. I only spoke a few sentences worth today, but my voice worked 🙂 Trying to talk on the phone is a nightmare when my voice is broken. I get real tired of people hanging up on me.

I didn’t notice the crowds until Heather was here. Ever since then, bunches of people drive up and walk by each Thursday evening, on their way to a 12-step meeting here in the community room. It sure has gotten popular! The first time I ever saw it here last year, there were 4 people. Olive likes watching the people. Every once in awhile, she will hiss at someone. I wonder what she knows? Ha! I turned to MASH on TV. As the helicopters went over on the screen, a helicopter went right over our parking lot. Olive stood up and stretched the full height of the window as she looked up. She seemed to be waving at them with one paw.

I am liking that aloe skin gel. The wound feels better already. But…my belly is humongously swollen and as hard as a rock. I went over to make sure my door was locked and my belly got there way before the rest of me 😦 I really need to take the darn Miralax twice a day, whether I want to or not and whether I can afford it, or not. Each time my guts have a major slow down, I end up with a new fistula or hole in my intestines. Gross! And frustrating!!!

Oh, that reminds me…yesterday’s doctor actually talked about me and West Nile Virus! Since few docs have a clue about what chronic WNV does to someone, they never bring it up. My internist first thought of it as a fever for two weeks. I hope he has learned different after knowing me. WNV sure has messed me up. WNV and MG are a bad combination! They egg each other on. Yup….I feel beat up today. I hope I regain some strength soon.