Early morning doc appointment

The downside to not having a working cell phone is no alarm. I had an 8 AM doc appointment. When I woke up at 5, choking and gagging, I did not dare go back to bed. That meant another 3.5 hour night of sleep. Sigh…



All the doc did was look at the ulceration on my hernia. I’m not quite sure why he really wanted to see me? I was in less pain this morning and my BP was 120/78. It was 21 degrees outside. I froze by going one block😛 Thankfully, the bad pain only started when I had to lift my hernia up for the doc. It was real owie for the block home. Now it’s borderline excruciating.

Several docs were hanging out together and talking this week. A surgeon in the group became intrigued by what he heard of my story. He wants to see me tomorrow. I know there’s nothing he can do to fix me…but this should be interesting….right??? I am penciled in for an hour. I looked up this guy. He has done a bunch of transplants, bariatric surgery and everything gut.

After noon, the hospice nurse came. She spent an hour writing down all sorts of info. She was nice. Said they would send in a social worker, nurse, aides, etc. I will believe it only when it actually happens!


I think I am getting more and more skittish. I’m having trust issues with anybody and everybody who has some sort of power over my life. Way too many promises and too few follow-throughs. I remember now why I hate asking for any sort of help. More often than not, it leads to frustration.

And….for the big crisis? This building has been without water most of the day. When I found out why…I was furious! Remember when I said a guy flooded all three floors in the other wing? He was messing with a sprinkler head, apparently pulled it loose and hundreds and hundreds of gallons of water went down the halls horizontally and down the walls vertically. It was never repaired!!!

I have heard from various people about mold in the walls, holes in ceilings from water damage, sparking wires, etc. It wasn’t until today that a guy told me that all this time there have been garbage cans in the hallways to catch drips. It has been months! Months and months! Landlords can get away with murder in Utah😦

I tried to go out to the lobby after the hospice nurse was here. Couldn’t get there from here. There was a 4 inch diameter hose running through the front door and up the stairs. It was the corporate guy with the box truck sized wet vac. I came back to my apartment. Around 5 PM, there were weird noises in the bathroom. Rusty water was bubbling up in the toilet. The sink spit out rust chunks. Olive kept hissing at the toilet and arching like a Halloween cat. Of course there has been no official apartment notice about what’s going on with the water…or when it’s safe to drink. Thank goodness there’s still drinking water in my Brita pitcher and I have some bottled water! I hope the water is cleaner for tomorrow’s shower. Eeeewwww….

My diverticulitis-like pain and burning in my left lower abdomen makes me want to just sit here and sob. I wonder if the surgeon knows how to stop it without surgery? That would be nice. I expect the guy only wants to examine me as a curiosity….not because he can help in any way. A bazillion sighs……..



Does God like Michael Bublé?

I’m absolutely sure God loves the person. What does He think of the music? Would God be smiling, swaying and tapping his toes like I do?

I was having some pretty horrific pain, so listened to Bublé’s latest CD. Even through the tears and distress, part of me was happy🙂 I used to listen to CD’s from the Mormon Tabernacle Choir and feel the same way. To me, it’s pretty obvious when music is pleasing and soothing and joyful….no matter what sort of genre it’s from. I like to think that God is pleased with uplifting and happy music. Sure, other types of music have their place..but I’m needing happy. I have a few Reggae favorites that always buoy my spirits.

As I was sitting here wishing God would take me sooner, rather than later, I was imagining the angels listening to good music🙂 Made me smile through the tears. In this world, I see people trying too hard to be edgy, technically proficient, ostentatious….whatever….instead of just celebrating life and love and nature and the soothing balm of good music. I notice that in the church. More and more, the people playing the pipe organ in the conference center or tabernacle are doing complicated solos. From my point of view, it’s trying to showcase personal proficiency over giving the glory to God through focusing on worshipping and celebrating. Just my opinion, of course. Personally, I want the music to make me feel closer to God. Michael Bublé makes me feel closer to God and angels than a pipe organ solo😛

I’m such an idiot. I did not want to waste the salad greens in my fridge….so I made a salad. I knew my guts were whispering not to do it….but I did. Ohhhhhhhhh, the agony! I don’t think I am digesting much any more. One of these days I will learn to listen to those gut whisperings.

Big tragedy here on the home-front. My bedroom fan died. I knew it was coming. The last 2 times I had to unplug it, the fan took forever to start spinning again. I bought the 2 box fans together and the living room fan kicked the bucket a few months ago. One perk of not going to so many doc appointments is that I have enough money saved to buy another box fan. Next time someone asks if they can get something at the store for me…I can say YES! I like that the guy who is taking Olive lives in the same building as me . I told him he has first dibs on everything in the apartment. Now I feel OK about replacing a fan….because it will go to him🙂


Ugh. I have been crying for hours. I am in more pain than I have felt in a long, long time. Something is major screwed up in my intestines. This feels like a horse race. Sometimes lungs are in the lead and it looks like I will die of suffocation. Then ulceration pulls ahead of the pack. Then diverticulitis or blockage comes racing up from the back of the pack. So many reasons for pain, distress and ultimately death!

In the middle of my wailing, I got another email from the home health and hospice company, saying they figured it out. A request had been sent to them by my doc’s office and now that it was located, they were working on insurance authorization. I thanked the person for helping me. Then after mulling it over for 5 minutes, I read the email again. It seemed to say I was being signed up for home health. I wrote back and asked if I was going to get that instead of hospice.

In the hour and a half between my question and the response, I went though hell. I was in screaming pain. I started to wonder if this was going to be another futile attempt at getting help. Then I was both depressed and angry. I wondered if my doc was being honest with me. Then I felt acute embarrassment. What if I was not terminal and I had already told everyone I was? Next was extreme anger. I would rather think of myself as fending off death for as long as possible rather than trying to break into the club. It just went on and on. I fought with myself for being in so much pain and for being disappointed I might not be in hospice.

I checked my mail every few minutes. By the time she wrote back and said they were enrolling me in hospice, I had fought a mighty war. Then, because I am perverse like that, I started crying even harder because I really am going to die!😦 This whole mess has taught me a lot about myself. I am crazy.

Everything makes me crazy!


Applying for a lifeline phone has not been easy. It looked easy on the website….and it should have been easy. I filled out the application electronically and then submitted proof via files. I uploaded the files to the website and two other times via email. Each time they asked for them again! That took 5 days. Finally today they accepted the documentation. Supposedly I will have my new phone by the end of this week. I will believe it when I see it.


Then there’s hospice. Two weeks ago I talked to the nurse from the new company. My doc said the paperwork was sent. I got an email from hospice today saying they still have not been contacted. Lord only knows which party has not followed through. I see the doc again this week.

no legs

The @#$%^&*! wheelchair rep sent me yet another email claiming that they just submitted paperwork to repair my brand new wheelchair that has broken twice now. Of course he claimed the paperwork was submitted months ago and they were just waiting on my insurance company. Liar, liar, pants on fire! Does anybody, anywhere take responsibility and tell the truth?


Truly….it often feels like a full-time job to be disabled and poor. It’s very frustrating being me. All I want is some help before it’s too late to help me.


This morning was a sort of new form of torture. I had wicked sharp pains in my lower left abdomen and groin. It felt worse than when I had diverticulitis. I had to run to the bathroom every few minutes for 7 hours. Feels like somebody has been kicking me and that the area is on fire😦 I was hardly conscious. Each time I went to the bathroom, my head was roaring…then I was totally not breathing or out of breath. Of course that made my heart pound until it felt like it was going to explode. I have been sweating heavily. I must say….I am a lot tougher than I thought! Why am I still here?



After 5 PM, I gathered up garbage and recycling to take out. On the way back in, I ran into the guy who wants to adopt Olive. He had already made arrangements with the office to come in and get her after I pass. I told him that I have been gathering up her stuff and writing him notes. He said he wants to come and visit us from time to time to get to know Olive. Cool🙂


Tonight Pauline came to visit. She wanted to see if I was still alive….and if so, did I need anything🙂 I got soooooo dizzy! I kept starting to lose consciousness. Despite that, we had a good time talking and joking around.


Thankfully forgetful


Yes! 6 hours of sleep! The second I sat up, I could not breathe. Scared the heck out of me. Overnight, I forgot that my diaphragm doesn’t work. Thank goodness for the CPAP and oxygen. And….what a difference an unbent cannula makes. My blood sugar was 81 when I woke up….more than a hundred points lower than yesterday. When all the components of the insulin pump are working, it’s a wonderful, magical device. When all is not well, it’s a huge PITA!

I had a breakfast sandwich and am now miserable. Darn😦 My guts hurt and my diaphragm is getting weaker. I have some strange sharp pains. And of course….my whole body is buzzing, quivering, zapping, vibrating and all that. My body is pretty darn worn out.


In the morning, the missionaries came bearing clean laundry🙂 What a huge blessing! After awhile, I put on my nightgown and hung up the clothes. In the afternoon, I was surprised when 2 men came to offer sacrament. I quick got dressed. It felt good to be able to take sacrament again🙂

Then there were about three hours that it was hard to both breathe and stay conscious. I got super weak and was only breathing from the shoulders. I could hardly think. My lungs got so congested that it sounded like screaming, drowning people in there😮 I wondered if this was how I was going to die. But….let’s be serious….I have no idea what it’s going to feel like to die. It was an extreme low point. Then all of the sudden, around 5:30 PM, I could breathe all the way to the bottom of my lungs! I have not been able to do that for days!


Earlier today, I got on one of my old favorite sites and offered all my camping equipment for free. I am hoping to give it to someone near SLC. What took me by surprise was all the people who knew me, wondered where I had been and had nice things to say to me. Wow! I tend to think of myself as invisible and insignificant. Yup….surprising to hear that some folks thought otherwise.

I’m too weak to lift up my hernia to take a pic. I hope it’s OK. I did put mupiricin on it. Sure would be nice to have a nurse to help me with that. I hope the hospice company gets back to me on Monday. Here is a good page about the myths about hospice.


End of life preparation


Last night felt touch and go. It was sooooooo hard to breathe! Even on my wedge with CPAP and oxygen going, I was marginal. Unusual for me, it took a long time to fall asleep. I was conscious of trying to sleep and I slept less than 3 hours. Got up at 2 AM and worked on gathering all of Olive’s paperwork and doo-dads. Her cat carrier is now full of her stuff, thanks to me…and missionary Kathy. I stayed awake until 8 AM, making lists of things to throw out or give away, stuff I should work on, making notes about ….whatever. I felt like I wasn’t going to live long enough to get Olive’s things ready. Then I slept for 3 more hours.


As is almost always true for me….I managed to talk for a few hours today. I could not stand….but I could talk…..sort of. Just like the old CHF days when I was absolutely worthless 23 hours a day, but could spend an hour talking to my friend at the post office🙂 I’m sure I drove missionary Kathy crazy. I felt an overwhelming need to talk things out. I think about and have dreams about being on the other side of the veil. When I talk about it, things make more sense to me. Neither one of my parents could be accused of being too nurturing or caring as parents. I want to know what they will be like as spirits! Will they be more mellow? Will they have learned unconditional love? What’s it going to be like to see them again? All my other relatives like grandparents and great grandparents, were nice people…..at least as far as I know. I’m curious about the woman that raised my grandmother after her mother died. I have lots of curiosity about those who have gone before me. It will be cool to know them🙂


I get energized by talking to people. That has always kept me going. Missionary Kathy came over to pick up my laundry and help clean the house. I finally asked for help with that. She was amazing! Things that take an hour for me to do took her 5 minutes. She was very thorough at getting cat hair and dust with the swiffer-like mop that Ingrid gave me🙂 Kathy also picked up and sought out cat toys around the apartment to add to the cat carrier. It feels nice to have things clean. I am very, very grateful.


Today I put in a new insulin pump set….then I took out the old one. No wonder my blood sugar was so high! The cannula was bent right in half. I was getting very little insulin.


Tonight Kissing Helen came over to check on me. I love her🙂 She’s the one who passed out, giving herself a purple face and cracked rib. She healed pretty darn well! She’s still sore and dizzy, though.


I found a website called YesUtah and signed up there for organ donation. I’m signed up all over the country thanks to moving so much🙂 Hopefully I will be found by someone, somewhere. I realize that most of me is a wreck, but maybe they can use part of my eyes, at least.


I get air quality emails. I doubt if many people do….or care, especially the polluters. I know the condo across the street does not hold back from burning in their fireplace😦 It’s always choking me up. Here’s the one for Sunday…

Wood Burn Action Condition: ‘VOLUNTARY Air Quality Action’ – Individuals are asked to voluntarily not use solid fuel burning devices, reduce/stop open burning, and reduce vehicle use by consolidating trips. Industry should optimize operating conditions to minimize air pollution emissions. Salt Lake County prohibits burning solid fuel in fireplaces or wood burning stoves and bans outdoor fires (including bonfires, patio pits and charcoal grill fires) on days that the State of Utah designates as either mandatory or voluntary air action (no burn) days. Salt Lake County Health Regulation
Health Advisory: The air quality is acceptable; however, for some pollutants there may be a moderate health concern for a very small number of people.

I am among the apparently “small number of people”….and even worse than ever right now. Breathing with my shoulders seriously wears me out. At least I am still breathing! I sit or sleep in front of fans 24/7.


OK…time to brainstorm. What do I need to remember to do before I die? What loose ends have I forgotten? And here are the gross pictures for the day. I’m getting too weak to lift the hernia up very well.


Still splitting open, still ulcerating, still bleeding and oozing.


I take more bad pics than good. But this shows my poor, lost belly button. It’s that little lump down from my index finger. 

Gosh, I sure am tired tonight.


I keep forgetting to add the Grand America Hotel pics. This was from my front door just before it snowed.

ga-from-home grand-america-lights

Change in priorities


It was sort of amusing to go grocery shopping yesterday. Most of my life I have tried to make healthy choices. Ever since the “nurse of death” got disgusted with me for continuing to take vitamins, I have been pondering all the consequences. I wanted to make sure there really was little chance I could survive before I ditched healthy practices. I have about 2 weeks of vitamins left.


While wheeling around, choosing foods to buy, I went for my usual oat bread. It felt awfully stiff. I squeezed the buttermilk bread next to it and guiltily chose that because it was softer🙂 I remember when I bought a loaf of potato bread each month for 3 months, a year or two ago. I felt guilty then for choosing softness over nutrition. But….I like pb&j sandwiches better on squishy white bread. I will blame it on the way I grew up🙂


I am always finding reasons to feel guilty! The latest is that I will die and waste food. Geeze! Stop it! And…standing for 2 whole minutes means that my breathing is cut off. Because I am sensible…despite my guilt….I bought a box of frozen biscuit, egg and sausage sandwiches. Breakfast after nuking for 2 minutes🙂 Of course, I still feel guilty for buying pre-made junk food😛


Olive had been on her little table, having her morning treat of a quarter of a can of cat food…when she was irresistibly drawn to the microwave to watch my breakfast sandwich go in circles. I took pics of her intently staring as the food nuked. She turned around and gave me “the look” when the camera’s flash went off….then she calmly turned again and kept watching. I realized that the pics I took included both the white bread and fast food😛


Dang! The new high dose of steroids has blasted my blood sugar into outer space. Yesterday I shot up three times the recommended insulin and still had a 278 reading. Just before the increase, I was so proud of myself for keeping it on target. My personality has not changed. I still want the best grades! Nobody is tougher on me than me.

It has been a long day….many friends came to visit. I realized that I was breathing using my shoulders. All that talking took a lot of air! My clavicles in the front and shoulder blades in the back were doing an awful lot of work. While my shrink was here, I remembered to Google that. Yup…it’s a thing. I wonder why I never thought to look it up before….or even put it into words? Duh!!! It’s my body’s way of coping with a trashed diaphragm. MG is a neuromuscular disease (NMD). Read this about shallow breathing.

It was fun to have visitors🙂 No matter how hard it is to talk…I cannot shut up. I started off the public part of my day by going to the office to pay my rent. I told the manager I hoped it was my last rent check ever. The maintenance man and the 2 office women and I had a long talk about my imminent demise. The maintenance guy and I often joked around while the 2 women looked a bit shell-shocked.

The the Relief Society president came with Travis, my home teacher. I enjoyed having them here🙂 I always feel happy when they are around🙂

Then it was time for my shrink. He filled out a short form about vital info/last wishes stuff. I’m grateful I met him. I went right to the mental health folks a couple of years ago when the idiot neuro tried to label me with Munchausen’s and then conversion disorder. The neuros I saw at the U would do anything for money…except care for MG patients. I hope God has a special re-education camp for people like them. The horror stories are many😦 Dan helped keep me sane while I was dealing with idiots.

Thank goodness for my internist and the nearby clinic who have prescribed my MG meds and taken care of me in the absence of a neuro.

icky 7-am

This was the wound this morning.

And now? I am wiped out tired. My intestines are trying to push free of my belly. Sometimes it feels a lot like being in labor😮 It sends waves of cramps across my hernia and then some. All day, the ulceration has been goobering. Lot’s of clear fluid comes out. I’m still waiting for the alien to leap out.

hernia-ball bruising

I thought these pics were interesting to show the stretch marks, bruising and the way one part of the hernia is like a beach ball.

I think the bruising is from the intestines pushing from the inside. They are on the bottom of the hernia, at a place that cannot be bumped. When Heather was in there, it felt like she was playing soccer. I had the same sort of bruising. It is sooooo not easy to lift the hernia up enough to see the ulceration. It takes a lot of strength and leaves me severely SOB. Sometimes my heart beats so hard and fast that it feels like it is going to blow up.

This is what makes my denial issues come and go. Some moments, death feels on the doorstep. Then when I sit quietly, don’t talk, stay cool…it feels less sure. I am so glad it’s not up to me to decide when the end will come!


I am good at denial


I tried to see the underside of my hernia in the bathroom mirror, but I can’t. I decided maybe it was doing better🙂 Of course my whole abdomen hurt all night and all morning. Then for one trip to the bathroom, the whole right side of my garment bottoms was soaked in clear fluid. That used to happen all the time before the surgery cuts healed shut. Then the next time, there were spots of blood. The time after that, I removed the Telfa pad to find it bloody. It looks a bit gruesome.


OK….this isn’t going to heal and I have to deal with that. It’s only going to get worse. I must accept that truth. It’s hard to shed old habits. Usually, given enough time, my body has been able to heal itself. The pressure exerted by a hernia is formidable. Both hands together cannot even begin to hold it back. As the force becomes greater, the skin and muscles have been getting thinner and weaker. The fate of other people with gigantic hernias is soon going to be my fate. You’d think I would have totally accepted that by now. Nope. There’s always been that ray of hope in the corner of my mind.


I wish what can be seen was all that was wrong. My entire abdomen is in pain. My intestines are trying to push through the skin. When I sneeze, cough or blow my nose, it feels like my intestines are about to pop through the skin. My diaphragm does not want to move. There are wicked bad intense pains within my skin and abdominal muscles. Sometimes I just stop breathing😦

smiths-mountains smiths-snow

I was going crazy….sitting at home, obsessing about my guts blowing out and my impending suffocation. I decided to take out the garbage and keep going. As I went towards Trader Joe’s, I spent a lot of time thinking I probably would not be doing this many more times. It was quite painful to go a few blocks.

orange-berry mountains-white

On the way home, reality was distorted. I felt awfully close to the other side of the veil. It’s hard for me to talk and breathe at the same time. It’s hard to just be. All the thinking and feeling can get overwhelming.

sky smiths-lot

I was very glad when I got home. I wasn’t so sure I was going to make it. I am safe and well provisioned. Will it be my last shopping trip?

Since I’ve been home, I have gone back and forth. Sometimes it felt like the end, sometimes I convinced myself there was nothing wrong with me. A lot to grapple with. Expect me to be weird. I am trying to be patient with myself.

Here are a bunch of myasthenia gravis memes…..

ivig mg-life not-well mg-struggle mg-christmas voice


Went to the doc again


I had to go back over to the doc’s office to pick up the rest of my prescriptions from yesterday. I took the chromebook with me and showed the pharmacist a pic of the ulceration. He flipped out and ran my laptop back to the doc. I was given an instant appointment. They did a swab of the site and then I was given mupiricin cream, Tefla pads and cloth tape to protect the sore. I heard them whispering to each other….wondering if it’s cellulitis. I heard LOTS of talk about me. The doc was very cheerful in person. He tried to make it seem OK. Truth is, my intestines are trying to escape from me where the ulceration is….and there is nothing anyone can do about it. He said hospice should be contacting me soon.

I again came home with my coat stuffed behind my back instead of on me. The people hanging out in the lobby all gave me a hard time. Heck, this would be a nice day in Vermont at 37 degrees🙂

Ohhhh! I packed up the stupid heart monitor and got it ready to ship back. It came in a box to send through UPS. I didn’t know I was going to be seeing the doc when I went to the pharmacy. I had the box with me and was going to go look for a UPS drop box. I pass by one, but was not sure where it was. I figured I could use my chromebook to look up the closest box. Hah! I got out of the doc’s office and right across the street was a parked UPS truck. I zoomed up to his door and gave the box to the surprised driver…and zoomed off🙂

This afternoon, I took off the stupid heart monitor for good. I got in the shower to peel off the 4 electrodes and my insulin set. And then I was BAD. I went to the doc’s office naked. Naked of sticky things, that is🙂 And I did not put my insulin pump and set back on until after 4 PM. I felt so naughty😛

The new, higher dose of steroids is making my blood sugar high. It will probably take me awhile to figure out how much extra insulin I will need to cover the med. Even if I died tomorrow, I’d rather have reasonable blood sugar, because too high or too low makes me feel sick. After wearing the darned electrodes, just the insulin pump, tubing and set feels like a lightweight. I hated that heart monitor!!! I felt positively gleeful to hand it off to UPS🙂

I’m sure I miss a lot now that it’s winter. With darkness early and late, plus cold temperatures and my window and blinds closed, I don’t hear or see so much. But…I’ve seen 2 ambulances today. The fire trucks just left from the last emergency here. I met one of the seniors from here over at the docs. A couple of people I know are getting surgery tomorrow and many folks here are sick. Temperature inversion season tends to make us drop like flies.


The fever/chills thing is intense tonight. One of these times that I blow my nose, my intestines are going to come flying out of the hernia. Then it could be said…


It’s happening very quickly


I woke up with a lot of belly pain. It just kept getting worse. Finally after a couple of hours, I took pictures. OMG! It had gotten bigger and looks worse already.


I sent emails to the doc and hospice. It feels like my guts are wanting to break through.



As I write this, I am watching the funeral of Trooper Ellsworth. He was 32 and had a wife and 3 sons. He was directing traffic around a downed power line when hit by a car. Heather turns 33 on the first and has 3 sons. I was able to make it to 60. If I live that long, I will be 61 in January. It makes me sad that some people never make it this far. I feel really sad for the trooper’s loved ones.

It happened!


I was exhausted. I got into bed at 7:30. Something about my belly did not seem right. The spot where the hernia hits my abdomen has opened up😦


I cannot see it without taking a pic. It’s not easy to lift the hernia enough to take a pic of the underside. I about fainted when I felt the raw spot with my fingers and I came even closer to passing out when I saw the pics. I think most of the blood rushed out of my head😦 I feel absolutely sick. This is what kills people with giant hernias.


The hernia has changed how my intestines work, it has altered my breathing, it’s the source of much pain and now the skin has ulcerated. My BP today was 150/80. The first thing the nurse asked is if I was in a lot of pain. Yup.


After taking pics of the ulceration, I slathered tea tree oil and lavender antiseptic solution on the ulcer. It took awhile, but I feel a faint burn. I am still slowly but surely getting back feeling from the surgery.


Each angle tells a bit more of the story. It’s kind of interesting to see the scar puckers, patterns and colors. It’s amazing it ever healed shut. I don’t think much can be done to stop the skin from ulcerating😦


We all knew this wasn’t going to end well. I can’t believe I lived through my belly dehiscing and the months of wearing a wound vac….and the last 3+ years of healing. I’m glad I lasted long enough to see all three of my grandsons and to watch Heather become a wife and mother…..among her many other accomplishments🙂

I am very weary of dealing with medical issues. Sigh……  It’s one thing to know what’s coming….and a whole other thing to go through it. I never did this before.

“The time of my departure is at hand. I have fought a good fight, I have finished my course, I have kept the faith.” (2 Tim. 4:6–7.)

The end gets more real every day. I wonder how long I have left? I’m glad I don’t know.