Stuff

I spent the whole day Sunday resting up from the choking. As I sit here, different body parts feel better, others feel worse. It has been interesting to observe. It is painful to go from lots of solumedrol to none. Ouch. It was just too much fun to be hyper and in much less pain.

An exciting thing was signing onto Relative Finder. I jumped from 28 pages of relatives to 46. What’s cool is that all these people are related to just one grandparent. Imagine how many I will have when I complete my family tree!

My vision is back to being double and blurry. One eye is partially drooped. My brain is slower. I wanted to do more genealogy, but after about 2 minutes, my head was going to explode.

One of my support groups is planning a lunch for this month. A mall was suggested as a gathering place. I haven’t been to a suburban mall in Utah. I have only been to City Creek to go to the Apple store. I just don’t go to restaurants or malls. I don’t have money to spend. I looked up this one mall. I can get on TRAX and be there in 22 minutes! If I feel good, I should go off adventuring some time. I could zoom around the mall and look at people :-) I now have a new place to aim for one of these days.

I really, really want to go back to the family history library and to look at the flowers on Temple Square. Today was my stake conference in the Tabernacle. I haven’t been in there since I moved here. I went in when Heather was 4 :-) Another must-do is some Sunday I want to go to hear Music and the Spoken Word, live, in the Tabernacle. I am only blocks away. I need to do it before I get too sick again. I watch it on TV.

Just the hope of possibilities is energizing. I have been sooo sick and weak for way too long!

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My laundry lady came to visit yesterday. No dysphonia, but my voice sounded rough. The more I talked, the better it got :-) I love being able to talk! Today she is coming to do my laundry. It’s more than I have ever given her before. Eeeek!

THE most annoying thing in the hospital and now that I am home is dizziness. IVIg and solumedrol improved everything but that. Today the dizziness is debilitating. That’s not fair! I am stronger, but I need my walker because I cannot focus my eyes right. Later today, I plan to go out in the community areas with just my walker. Nobody has seen me walk with it outside my apartment for about a year. I hope I don’t crash and burn. Now that I moved to this apartment, it’s a long way to the mailboxes.

I tried to talk to the hospital supervisor doc about my eyes when he came to see me in my room. He understood nystagmus, but when I said oscillopsia, he looked panicked. I doubt he knows what it is. I hope he looked it up :-) The supervisor doc was very self-important, not calm and kindly like the old guy hospitalist doc. Each time he lectured me about sticking with one neuro and getting preventative care before it became a crisis. I wanted to punch him in the nose! Nobody has ever tried harder to get appropriate MG care. Geeze! He didn’t want to hear it that insurance had denied my IVIg within the month. It was obviously MY fault.

I had fun today :-) I spent 3 whole hours out in the common area walking, talking, dancing and smiling. I made a lot of people do double takes. I went all the way down the hallway, walking briskly. How cool is that??? Everybody was stunned. Many thought I was “cured”. I had to explain in 3 or 4 weeks, I will be dragging. I am now imagining a crowd of senior citizens armed with pitchforks, storming my insurance company :-) People were royally pissed to find out I could have been like this all along, and they were especially flabbergasted to discover the insurance company has no interest in keeping me breathing and all that, even after the dramatic recovery. Welcome to the world of being poor in Utah.

Queasiness Alert and Warning!!!! Avert your eyes if you don’t want to hear this. When I peed this afternoon, a giant blood clot popped out of my vagina. I no longer have most of my female parts after getting the hysterectomy….no uterus to bleed from. I was scared and confused. Then when I sat down in my comfy chair, air kept coming out of my vagina. DANG! That means it’s the colon to vagina fistula. That was confirmed the next time I had to pee. It stung inside the vagina…..and still does 2 hours later. That means the colon to bladder fistula is also involved.

Suddenly I put it all together. The reason I have been blowing chunks of dried blood out of my sinuses and nose, then bleeding inside of me is because of all the heparin shots I got in the hospital. Anywhere little bits of blood were leaking out, even more blood came out thanks to the blood thinner. I wonder what my diverticulitis is doing? Now when I wipe, it’s pink. That means it’s still slowly bleeding. AAAAARRRRRGGGGGHHHHHHHHH!!!!!!!!! Not another problem! My internist can’t see me until next week. I am going to write an email to the nice old guy GYN and ask him what he thinks. Last time I was on high doses of solumedrol, I bled and was diagnosed with endometrial cancer. So, my problem is probably a combo of the solumedrol and heparin. Dang it!

More roller coaster riding.

RollerCoaster

 

This has been rare disease week. I am the poster child.

now

This post started earlier….

OMG! This cracked me up big time. This is day 4 in the hospital. Half of the docs and every nurse have come to my room to see the repository of so many rare diseases. I was in ICU Tuesday and 12 hours later I was healthier than I have been for 3 years. Nobody here had ever seen such a dramatic turn-around. Thank you IVIg infusions!!!!!!!  I have never been talked about so much in my life….that I know of :-p  Every sort of medical person, aide, housecleaner and food deliverer seems to know my story. Good thing I am sooooooo not a secret keeper! :-) And the funniest thing of all????? Somebody started a rumor that I am nice. Ha ha ha ha ha. Too much fun for a hospital stay :-)

http://www.buzzfeed.com/findacure/17-things-youll-only-understand-if-you-have-a-rar-1bze2?fb_action_ids=786647218097661&fb_action_types=og.shares

Now it’s Sunday morning. What a maelstrom of mixed emotions! In the middle of the night and then this morning when I woke up, the first thing I did was choke my brains out. I was so tired that I slept like the dead. I don’t think I moved around in my sleep. Both times I woke up with too much snot and saliva in my nose and throat. The second I woke up, it was a struggle to clear it, hence the choking. This morning it was I-might-die kind of choking. The weakest link in my whole body, besides the MG stuff, is my incisional hernia. When I choke, I can feel the hernia rip and roll. When I stand upright and/or walk, it also feels like it’s ripping. My whole body is quivering and trembling after the choking. Scary!

Thanks to all that solumedrol and IVIg, my body is artificially hyped up and most of my nerves and muscles are talking to each other. I seem OK if I am not at all stressing any part of me. When I move too much or choke too much, the fragile facade instantly crumbles. The weakness is intense. What has kept me going for the last three years is conservation of energy and protecting the over-use of my neuromuscular junctions. I rarely depleted my acetylcholine. Now I initially have strength, but it uses up my precious stores and BAM!, I have virtually NO strength. It’s way too dramatic :-o My understanding is that my lack of treatment has irreparably caused further damage to my body. I have never been so reactively weak. Seemingly strong to profoundly weak in seconds. If I am not careful, I think it would be easier to accidentally kill myself right now. Sigh…..

I predict that today is going to be mentally tough on me. This is my first day of no steroids and no one to talk to every few minutes. I have to come down from out of the clouds and work out my new reality. I need to be grateful for the new lease on life while being cautious. It’s very weird to feel powerful one minute and weaker than ever the next. I was hoping I could go to church. The choking and weakness brought that thought to a screeching halt. I know that the rollercoaster has just begun…..again.

I am worried that I am developing a sinus infection. I can blow crud out of my sinuses for a couple of minutes straight. It seems to be connected to the salivary stuff…..and why I am now choking so much. My ear, sinus, teeth, salivary glands, throat are doing some dicey things right now. Blech….

So much to learn in life!

keep

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.

discharge

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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!

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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!

WendyHome

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.

OliveHomeWhooooooooo 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 :-o 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! :-o

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!!!!!!!!
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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 could use some extra prayers

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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 :-(

Wendywimpy

Not again….

tired

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…….

terrible

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.

sarcasm

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.

knew

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.

wrong

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!

time

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

nosnow

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!

happy

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

911

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

tude

Was there life before the internet and Google?

rope

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.

I still feel like grumpy cat…..but a touch less grumpy :-)

Fitness

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