Off to the museum!

charmingbones

I’m never doing that again! I took TRAX to the U. But before I could get to TRAX, there was a kid’s parade for Pioneer Day. I wondered how I was going to get there from here. I had no idea a parade was going on until I got to it. There was just enough room between a gaggle of kids in yellow shirts and a marching band. I zoomed across the street and zig zagged through the library grounds.

boney

It was 1.9 miles from where I got off TRAX to get to the museum. Mostly uphill and some of it very steep! Of course there were stretches with no sidewalks. By the time I got up there, my newly charged, 15 mile usage battery was more than half discharged😮 Then, it was really, really hard to get through the front doors. People just watched me struggle with the 4 different door handles and no one helped. Definitely not friendly to a lone power chair user.

StrangeDinosaur

Today there was a special activity going on at the Natural History Museum. A docent showed people how to swish and spit in a tube, add soap and alcohol and then put a clump of their DNA in a pendant to wear. I enjoyed watching and listening to a little girl chatter on about how important DNA is and that hers looked very good:-)

It was great to have a free pass to the museum. I’d have to be a heck of a lot richer to be willing to pay $14.95 to get in. The place is huge. Some places it’s more than 5 stories of soaring ceilings. I liked sitting in my chair at the top and looking down at all the little people. I guess to house dinosaurs, it has to be a big place! A bunch of the dinos were too big to fit in a camera frame. I was into the little dinosaurs, the fierce dinosaurs and the dinos with impossibly long and thin necks and tails. My back hurts and my spine is awfully short compared to theirs.

The massive teeth on some skulls gave me the chills. I wouldn’t want to be gored, either!

 

mastadon

Hmmm….thanks for the reminder. It’s time to take my mastadon.

FishFossil

How about a fish fossil? There were lots and lots of these.

NavajoCradleBoard

My favorite sections were the ones about Native Americans and the fossils and gems. When Heather was a baby, my mother lived with the Navajo. A guy made a cradle board just for her. It looked a lot like this.

NAstuff

Exhibits were organized by tribes. Now I cannot remember which tribe these things were from. The section on Navajo things looked just like the inside of my mother’s house in Arizona.

purplequartz

Purple quartz. My color!:-)

birdrelatives deadbirds

I was slightly creeped out by the dead birds, but especially liked the magpie and pheasant. I am surprised I lasted inside the building as long as I did. Even though they seemed to have an excellent ventilation system, after an hour, my lymphs got unbearably tight and swollen.

storage FossilLibrary

Bone storage

I was ready to call it a day and go home. To move around the building in my chair, meant sometimes going up ramps and sometimes using an elevator. When I was ready to go back to the first floor, there was a sign that said elevator out of order😮 Me, panic? A nice employe showed me how I could exit from the second floor and follow some serious ramps to real dirt. Whew!

datura

I looked to my right, and there was Red Butte Gardens. I hemmed and hawed. I never wanted to go up that hill again. But….my chair’s battery was low. Oh, what the heck. It was free and I only have to the end of this month to use the pass. I knew I would never come back and pay $12 to get in.

orangeroses

More difficult entry doors. I pushed the handicap button to open the door and ended up stuck between both doors, with no button in the middle. Actually, the more I try to remember, the less I am sure if it was the museum or the garden’s door where I got stuck. Someone did help me when I was in between doors.

whiteflowers

After checking in, I was told to go up the gold elevator. It was a most unpleasant experience. My chair had to be at a weird angle to get the doors to shut. Then when I tried to get out, the door repeatedly shut on me. Fortunately for me, I was able to use my left hand to push the open door button while using my right hand for the joystick control on my chair.

perennialphlox

There were 3 double doors to get from the building to nature. None of them had handicap buttons. I waited until nice people came along and let me out. It was like another world once I got outside. I loved the secret little gardens.

leafyceiling

To get into the little gardens, I passed through an enchanting arbor. What a perfect green leafy roof! Ahhhhhhh…..shade.

thickvine

Look at the trunks on these vines! They must be quite old. I have never seen anything like them.

viewthrougharbor

There were many different arbors opening up to several sorts of gardens.

herbgarden

The sunken herb garden was gorgeous.

pap

Is this a papyrus plant? It’s having an interesting hair day :-p

vista

It would have been nice to be there on a cooler day with a fully charged battery. I decided I got my money’s worth in half an hour:-) Back to the doors with no handicap access, but a volunteer came running and let me in. Ha ha ha ha…I thought all was well. Then I had to go down the elevator. It was a tough maneuver, but I squeezed in enough for the doors to close. I thought I was very clever to back in, so it would be easier to get out. WRONG!!!!!!! The door open button was now on my right side, but my right hand was busy steering with the joystick. The door became vicious. It didn’t hit my chair and open. It progressively squeezed the chair, harder and harder. I yelled help. People looked at me and went back to browsing. I screamed PLEASE HELP ME!!!! Then 2 employees came running. They positioned themselves on each side, put their bodies into diagonals and pushed with all their might. Now the door was squishing all of us. It was unbelievable! They were shaking from exertion. It was as if the damn thing wanted to kill us. They would push the door open button and it would hit us harder each time! I would love to see a security video if they have one. Would you believe that NO onlookers helped the two young, thin girls and me???? By the time we got out of there, I had totally dissolved into tears. It was probably THE most terrifying thing that has ever happened to me as a chair user.

SLValleyPollution

I somehow pulled myself together, took a pic of the SLC pollution line in the valley and made it home. It’s a lot safer to stick to grocery shopping for entertainment!

I was calm…

morningclouds

I was sitting here, enjoying the light, fluffy morning clouds when the phone rang. It was the Medtronics rep and she wanted to know what color insulin pump I want. I ordered pink to go with the chair:-)

Then I tried to call Rhett. Just like yesterday, it went right to voicemail. I then called where he lives and asked them to give him my phone #. A while later, he called. Well….the shock deepens. I cannot believe the crap his relatives have dragged us both through. I do not understand most people AT ALL! Why do people feel the need to lie and take liberties with the truth? All it does is screw up their own lives and everybody else’s. The webs of anger, lies, violence, disrespect and selfishness boggle my mind.

In teachings of my church, one of the biggest deals is that God has given us free will. He guides us through the Holy Spirit, but it’s up to us to choose and follow our own paths. I do not understand why people from this tradition would then turn around and try to micromanage the lives of others. I am going to do my best to refrain from airing specific dirty laundry. It would take a forklift to move😮

When I was a kid, I was used as the messenger. My parents would say snarky things that I was supposed to tell my grandparents and uncle…then vice versa. At some point of my life I caught on to what they were doing and became unwilling to participate…which only got me in more hot water. That’s how I feel today. I think I am being used as a way to piss off one faction of Rhett’s family. I am grateful I now know what happened to Rhett. I hated not knowing.

Listening to Rhett on the phone brought back a whole flood of memories. There’s the good Rhett and the bad Rhett. He can be very charming and also very contentious. His disabilities are in his head…blindness, bipolar, brain damage. It was always hard for me to know how much slack to give him. What was disability and what was just plain mean stubbornness? I don’t think I will ever know the answer to that.

As Rhett was remembering our past, he said a few things that were glaringly wrong. He said I would not let him get up to use the bathroom and I had told him to stay in bed. What!?!?!?! Never, in a million years, would I say such a thing. Is that an implanted memory, something misremembered over time, or is it the result of his 17% short-term memory? He DID correctly remember how much I hated his stupid talking watch. He would push it all night long and wake me up. I was already overworked and overtired, so lack of sleep was close to making me go berserk! I was probably a heck of a lot more sensitive to that thanks to West Nile Virus. I’m sure I was no picnic to live with, either. It’s only now, after WNV is lessening its grip on me, that I realize just how weird that #$%^&!! mosquito made me. I was one giant raw nerve…and Rhett was on it :-p

A lot about our life together was very bad timing and interference by outside parties. We all are influenced by our upbringing, no matter how much we would like to believe we have risen above all that. The biggest lesson I have learned from our families of origin is that lying and secrets are killers. That’s why in my blog and my life, I try to go way out of my comfort zone and be as transparent as possible. I would rather have absolutely nothing to hide from anybody, anywhere. Yes, there are some things I don’t share, but they are not deep, dark secrets.

And…there’s a lot to be learned about a person by looking at their parents. I shudder to think how I have negatively impacted my daughter with my collections of inadequacies, quirks and idiosyncrasies. In my defense, I think I did the best I could, with the understanding I had. If only we got kids after a lifetime of figuring out life! There were also good things about me. My kid took those and amplified them a great deal:-) I should have taken more seriously the impressions I had of Rhett’s relatives! But would I have NOT married him because of that? No. I suffer from the hope springs eternal gene.

darkclouds

OMG!!!! Rain drops!!! The first raindrops I have seen in forever are hitting my window….maybe a dozen of them:-) At least we have some serious clouds! Most of the rain is virga…it never makes it to the ground. Half an hour later, there were 3 raindrops:-) So much for “rain”.

I talked to Rhett a long time today. We both have free government phones with a 250 minute cap. We only quit talking because someone got worried about him and went to get him for lunch. I heard her say that everyone else had already eaten. The hard part for me is going to be navigating between missing the good Rhett and wanting to be far, far away from his evil twin. I wish I knew how. Is there a manual for that?

Mostly I am relieved to know he is in a good, safe place. The pics online are of a nice, caring, protective environment. He has needed that for years. I still have nightmares about his living conditions when I first met him and then 5 years later when we got married. Humans should not have to live like that. Then, when he went to live with relatives after I was in the hospital, he lived in constant chaos and contention. The stories freak me out.

Meanwhile, I was here by myself, struggling to get the healthcare I needed. It is amazing I lived through it all. What a depressing time to look back on! It was all made worse for both Rhett and I because there was a lot of unfinished business between us. Open communication and telling the truth about things goes a long way towards a more balanced life.

So…I am in my usual state of confusion today. I love Rhett, but it’s better we just keep it as 2 people who care about each other….one in Idaho and one in Utah. The best time Rhett and I ever had together is when we drove from Florida to Idaho and back. I told him everything I was seeing and took him on all sorts of adventures. Then there were the bad times…like when he wanted to move to Missouri because I wanted to go there. That was awful! And it sure was crummy the last few months we were married and together. Why is life so complicated? I guess it’s so we will learn lots of lessons along the way.

After being alone day after day for months and years at a time, it was nice to talk to another human being that I have connections with. Until today, I had no idea how much I missed that. I feel like I have been some sort of stoic martyr, trying to pretend my life was OK, when there were things that really sucked. I almost hate to feel any bond…because now what do I do with that feeling? I do not want to repeat the past and I am very tired of feeling like I’m missing out on human companionship. Being alive hurts, but trying not to have pesky feelings is even more worse. Where’s my shrink when I need him?

Neither Rhett or I can afford a divorce and we don’t want to live together, either. Sigh….I wasn’t willing to admit just how lonesome I have been until just now.

me

Here’s my round steroid face and lopsided MG mouth today. I’m still alive! I was trying to explain my huge hernia to Rhett. I’m not so sure he understands what I’m explaining, but he was incredulous. As I was searching for the right adjectives and word pictures, I realized just how traumatic the whole hernia thing is. Ugh.

I only cried once while talking to Rhett. It took me by surprise and I felt stupid for getting emotional. We were talking about dancing together. The best I can do is hold on for dear life and sway with the music. I have always been a dizzy person. Rhett’s aunt took pics of us swaying and smooching. That is my favorite picture of us. Not very good quality, but still favorite. I remember how happy I was that day.

smooching

Power outages

poweroutages

I think it was around 1:30 AM. I hadn’t been asleep long and I was in very deep, exhausted sleep. I woke up confused. It took me an awfully long time to realize I was hearing the oxygen concentrator alarm and not breathing forced air through my mask. I could not understand why my eyes weren’t working. It looked like the air was full of smoke that was swirling around. My heart was about beating out of my chest. Bit by bit, my hearing, sight and brain came into focus. I thought the alarm I heard was the building’s fire alarm and I thought the building was on fire!

I reached for my headlamp and it would not turn on. I fumbled around and accidentally popped the battery cover off, spilling the 3 batteries. It was during the intense panic that I realized the power was off and it was not a building alarm. I think the stress of the day had contributed to the more than usual panic and confusion in the night. After 5 minutes or less, the power came back on.

I still felt shaken up when I woke up this morning. Well, at least my blood sugar was a very good 99:-) I spent a few hours with both windows open, but all too soon temps were back in the 90’s. I closed the windows and put on the A/C when the mold got too warm and too intense. I had been feeling miserable and blowing my nose. As I was getting up for the A/C controls, there was a woman bent over outside my window. She was taking pictures. When she stood up, I recognized her as the second in charge of the non-profit housing that owns this building.

I do not understand why only a few apartments have dead areas under their A/C units, but it has been true of this place ever since I moved in. I heard there was a big blow-up between the RA and the guy who put the new wheel on my wheelchair. He often stops at night when my window is open and chats. Lots of people talk to me and Olive like that. The RA thought it was improper. Now I’m wondering if the picture taking is to chastise the landscapers, to yell at people coming to my window or to better understand why mold is growing in the A/C cabinet? No one has done anything about the mold in here😦

Soon after that, the power abruptly went off…again. Wow….so quiet without the A/C or all my fans! It briefly blinked on, went off and after a minute, came back on again. I wonder if the power outages are from such high usage rates in this awful heat, or if it’s from something else? Thank goodness for A/C!!!

jen

I was busy non-stop all day…..but what the heck did I do? I took a 3 hour nap:-) Mostly I answered emails and responded to things in support groups. Everyone is sad and stunned about Jen’s death. So young, so pretty. Sigh….

I went out to get my mail, talked to a few people, did one lap around the parking lot and that was enough to wear me out. Another scorcher of a day. Our weather station never matches the official temps.

temp

Late in the afternoon, the power went out for the third time. I ate the prisoner-grown blackberries. I skipped supper and really should eat something. Having a love/hate relationship with food.

My shocker of the day was learning that Rhett is alive and well and in an assisted living facility. For three years now I have wondered whatever happened to him. His absence felt a lot like a death. He was whisked away and there was never any discussion. Here one day, gone the next. No closure whatsoever. This feels like a resurrection…but a confusing one. I am still married to him. I don’t even know him. At least I recognized him when I saw his picture:-) Lots to process. I am not interested in reunification. God moves in mysterious ways. Very mysterious……

RhettPicnic

 

A frightful day!

I called the cancer hospital and got an appointment for a port flush. They said be there in an hour. I left right away. Just as I got to the library, TRAX went past. I figured I had plenty of time and sat in the shade of the library and messed with the wheelchair controls. I figured the best way to get on the train would be with the seat upright and the feet all the way down. I should have realized something was up when the chair scraped going up to the platform. I sat next to one of the handicap symbols because when the train stops, it’s roughly supposed to line up with a train door that has a ramp button.

sign

The train was late. They kept changing the sign. When it pulls up, it’s so a column is right where I need to get on the train. I was able to push the button by going at a diagonal. I repositioned and got half way up the ramp. Those stupid prongs that stick down dug firmly into the ramp. The door closed and the ramp was trying to retract. I could not move forward or backward. Can you say scared shitless????

I panicked. I angled the chair at a diagonal and was able to move just enough to get away from the side of the car as it zoomed off. Then I sat there and cried. That shook me up big time. I had 10 minutes to cry before the next train came, since that one had been late. Usually they are 15 minutes apart.

prong almost touching ground

With the footrests in the down position, the stupid prongs are only about an inch from the ground!

I readjusted the wheelchair so the footrests were up and the back tipped back. I checked, and that made the prongs further from the ground. It was scary going up the ramp, but I had more room next time. Ironically, when we got to the end of the line at the U, my door stopped right smack dab in front of a column. Since the train would not move for maybe 10 minutes, I took my time and went painfully slow so I could get around the column while only falling off the ramp a little.

It’s a long way from the TRAX stop to Huntsman cancer center. The very last door I have to go through to get to the hospital elevators has no handicap access opener. It’s really hard for me to open and get through. It’s a darn heavy door. So I get to the BMT/Multiple Myeloma clinic and no matter how slow and careful I was, I could not get through the door. The prong things would hit the door stop framing in the door. I ripped one side half off and apologized profusely. After a few minutes I got through, only to find out they had moved the registration area. The infusion scheduler took pity on me and registered me. Then I had to go out and wait in the hallway.

Some absolute idiot has re-arranged the furniture in the hallway. The way the new registration area is set up, my wheelchair could not get in there, either. I asked the woman closest to the main thoroughfare if she knew who to talk to about there being no handicap access button. She gave me a name and number to call.

Got off the train and went to Tj’s and Smith’s. Cottage cheese was on sale for $1 each and I splurged on a 19 cent banana. It was at that point that I remembered I wanted a haircut. Duh! Good thing I had the food in an insulated bag.

caferio

This is from Google Earth. I follow the thin diagonal striped ramp from parking lot to sidewalk. As you can see, if someone backs up onto the sidewalk in the handicap space, that leaves little room on the sidewalk between cars and building.

If you thought the TRAX incident was scary….you ain’t heard nuthin’ yet! It’s a short hop across the Smith’s parking lot to Cafe Rio. I go up their curb cut, around the outside of their restaurant and to Great Clips. It’s almost always a PITA because tables and chairs block the sidewalk. Well, some idiot had a pick-up truck backed into the handicap spot so far that I could not go up the curb cut and pass between the truck’s hitch and the café. I asked a guy going in to find the owners. I doubt he even tried. So I just sat there, until 4 Utah highway patrolmen came out of the restaurant. They decided it was easier to dismantle the truck than find the owner. The biggest cop knocked on the hitch, pulled the pin and took it right off the truck:-) Even then, I just barely squeaked by.

A few feet further was a lone table and chairs in a place I have never seen one before. I could not get past. I came up near the chair, held on and backed up. And promptly fell part way off a very tall curb. I have no idea how come the chair did not flip. Just then, a young couple came along, picked up me and the chair, and put me back on the sidewalk. Then I squeaked by several people at tables who had to move out of my way. I had no strength left and was shaking like crazy. I struggled with the door. A nice customer jumped up and let me in. Whew! What a community effort to get a haircut!

Turns out that guy and I were done with our haircuts at the same time. He opened the door again and ran interference for me. He pushed in all the empty chairs, turned the corner and moved the offending chair at the rogue table. By then, the pick up was gone.

Then I wheeled it home. I had left both windows wide open to air out the place and bake out the mold. It was 101 degrees! I closed the windows, turned up the A/C and it’s still 99 degrees at 8 PM.

After that, I’m afraid to go anywhere for a while! There are a lot more loves and hates about my power chair. Maybe another time. I am wiped out!

tired

Oh…on a sad note about going home. Today it was announced in the MG groups that 2 women have died. One of them was young, with kids still at home. We often had a lot of the same stuff wrong. In these situations, I always wonder why I am still alive and they aren’t. So sad😦

hope

Air

breathe

Getting enough oxygen has been my constant struggle for years. Geeze! The veins in my neck are popped out and my clavicles hurt. My chest hurts and my rib area is sore. Now I have the headache that goes with that. I have never liked the medical word for all that…dyspnea. I see it in my medical records a lot. I suppose the biggest reason I have it is myasthenia gravis. My diaphragm gets too tired to breathe. Add to that asthma, anemia, allergies, COPD, my hernia taking up too much space and low blood oxygen. I hate it when I go on these yawning jags. I yawn and yawn and yawn and cannot seem to stop.

My whole head is stuffed up from the darn mold and other allergens in the air. I keep waking up despite CPAP and supplemental oxygen. My ears are stuck and there’s gunk in my throat. I don’t want to sit up! I want to sleep. Sooooooo tired!

predface

Somebody posted this on my MG group. We all agreed we looked and felt the same on steroids. Look! There’s even a crop of skin tags on the neck

Thanks to Medrol, I am getting the obligatory fat pads around my neck/chest/back. When I lie down, flat, I feel like I am being strangled. The fat pads help cut off air. Not liking this😦

I think I wrote the above in the middle of the night. When I read yesterday’s blog post and what’s above here, I hardly remember any of it. That scares the beejeepers out of me!

watchcat

Olive watches and waits

So this morning I wasn’t so sure I would make it out of the shower. I kept dropping things and my knees were continually buckling. I did not have enough strength to use my arms to shampoo. My eye was drooped closed, my neck would not hold up my head and my vision was the pits. And breathing! I feel like I am sucking air through a straw.

assembly

Unpacking and assembling the chair

The problem wasn’t my blood sugar. After waking up and taking a shower, my morning test showed 98. That’s good:-) I needed to get dressed and move around my old wheelchair and some furniture. Time to make room for the new, pink chair. The guy spent about an hour and a half adjusting the chair to me. I am glad to have a working chair. The gadgets will be a huge learning curve. The legs raise and lower, the back tilts, the seat comes up a bit and OMG…the controls are complicated. I can even program the joystick to control anything that’s bluetooth enabled…like a TV or computer. Sooooooooooo much to learn!

cushions

The Roho seat cushion is fantastic

Very comfy cushions. But I am sorely disappointed in the arm rests and leg rests. NOT comfortable at all. I tried to sit in my power chair to use my laptop and gaze at the TV. No way in heck! It hurts😦 The armrests are way too short for my arms. That means the sharp, unyielding edges dig into my arm. Also, it made my left arm dangle and felt like my arm was coming out of the shoulder socket. That’s the part I hate the most.

legmechanism

Leg rest with hydraulic lift leg and shin holder

What I love is that the ride is way less jarring. Bumps don’t hurt so much. I also love the color:-) I HATE, HATE, HATE going through regular sized doors. There’s maybe a half inch clearance on each side…in other words, it’s almost impossible to not hit something. I especially hate the pegs that hang down at an angle out front. I have done some damage to property today. I took off paint and metal from my apartment door, I nicked the cement walls at the doc’s office and I hit something at the library. Hopefully I will be better at driving as I practice with this chair.

bigQ

Pink!

Another huge annoyance is this thing that’s midpoint in the arm rest. It connects to the chair rail so I can put weight on the arm rest. I’m not sure if the guy forgot to tighten the Allen wrench spots or if it’s designed stupid. The connection keeps coming undone and it’s a total PITA to be sitting in the chair and trying to get the parts to fit back together and stay that way. When that connection comes undone, the armrests point to the floor.

new

Something I love are the padded restraints that keep my legs together. When I am toodling down the sidewalk and am MG weak, my legs fall apart…not very attractive! Now my legs are corralled. It also keeps my skirts away from the wheels. Fewer holes in my new skirts!:-) I’m going to find a bunch more love/hate issues. I already miss the seat belt on my old chair. Maybe I can switch them? And even though there’s a Trader Joe’s insulated bag hanging from my headrest, this chair had no place for a bag to hold on to and the headrest is much flimsier. I have no clue how I am going to go grocery shopping😮  It really sucks that the wheelchair guy showed me where the 8 reflectors go instead of putting them on. Would have taken him 2 minutes. I cannot bend to stick the reflectors to the caster wheels. Sigh……

chargingChair charging up for future adventures

After the delivery guy was done fiddling with the chair, and giving me basic instructions, I was on my way to the doc’s office pharmacy to pick up meds. But, I met Gordon who was on his way to the senior center. He said they were giving away free food at 1 PM. We bopped over there in our chairs. Turns out it was a sheriff or two and some inmates. They grew the food at jail. Aha! I found a news story about it and I recognize the shirts they were wearing.

hasbeen

I love looking over at my old power chair as furniture and the pretty flowers:-)

Bonanza!!! I got fresh Swiss chard, basil, oregano, sage, carrots, radishes, Egyptian walking onions, blackberries and fresh-cut flowers. I beamed the whole time and thanked the prisoners profusely:-)

I brought my goodies home and put them in the fridge. The flowers went in the mug I got as a Christmas present. Then I really did go to the pharmacy and to the library to take back a book. By then I was barely moving. The heat and sun are wicked intense today. I have been chilling out in freezing A/C for the last 4 hours and am just beginning to feel human again. But, ohhhhh, my head is about to explode😦

Geezum crow! The Jordan River has been “closed”. That’s where I went down the Jordan River Trail. Just now it was announced that the pond at Liberty Park is “closed”. Not sure how bodies of water can be closed. No one would swim there…ever…at least on purpose or if sane. The water in those places always looks gross. What’s going to happen to all those cute duck babies I took pics of? They’re too little to fly. How are they going to escape the toxic effects?😦

puzzling

While I was at the library, my phone rang, it was the endocrinologist. She read off my blood test results. She didn’t do more than a regular old CBC. That’s not what she told me in the office. Huh??? She promised to prescribe more Humalog and test strips. I feel confused about the endo. Heck, I feel confused about everything all the time.

My belly is still swollen tight. Who knows what’s happening there? It hurts and I’m queasy. The new, flimsy seat belt slips down and off my hernia and makes it feel worse. Bummer. I will study up on ways to tweak my new power chair. I have 3 thick manuals and a bunch of paperwork to read.

Now to think up ways to cook my yummy vegetables:-)

Sunrise in the park

greenhouse

I woke up way too early. I couldn’t breathe. At least my blood sugar was a nice, calm 100:-) The temperature was 85 that early in the morning, but there was a stiff breeze. After a while, I couldn’t breathe well even sitting up. I decided to take out garbage and recycling for fun and excitement. Wow! The air felt perfect! I brought back my recycling bucket, grabbed my camera and ID and headed for Liberty Park.

honkerconvention

The honkers were resting on the edge of the pond.

duckmammaandbabies

It must have been designated swim time for ducks. Ducklings in all directions! Lots and lots of baby ducks. One mom had 8 of them.

kids

You can tell from the pics, it was still pretty early in the morning. The sun had not come up all the way.

morningduckpond

Who knew there was so much going on in the park at 6 AM? People were picking up litter, big strong guys were pulling dozens of garbage cans to the road, a man was fixing something in the kiddy canyon water play area, gardeners were out, and lots of joggers, walkers and their accompanying pets.

wateringpark

It was tricky to plan a quick transit past the sprinklers at just the right time in their oscillation cycles.

wetpath

Some stretches of sidewalk were trickier than others.

mountainthroughparktrees

I liked the way the lower bench foothills were glowing in the sun that had not hit the park yet.

earlyAM

I get up to the woman and was curious what she was doing. Putting on make up!

RomneyManor

This apartment building is diagonal to the park. This is one place I applied to live.

The whole time I was gone, I was supremely queasy…and burped the whole way. I don’t mention it as much any more, but the pain in my left belly/side has not let up for more than a month. It was really annoying this morning. By the time I got home, my blood sugar was 103 and I felt like I had better eat breakfast before I felt worse.

Dang! Food seems great going in, but then the bent-in-half sharp pains start. 5 hours after shooting up plenty of Lantus and Humalog, my blood sugar is 183. I feel all shaky and yucky. I do not understand my body at all.

I sent an email to the wheelchair company. They said they got my special ordered seat cushion Friday and can bring my wheelchair Tuesday.

Then I got an email from the clinical pharmacist’s office wanting my #’s for the last week. They got a twist in their panties when they found out I saw an endocrinologist. They want me to dump them and go with the endo. OK by me.

Got a call from Medtronics. They say I should have the pump in 2 to 3 weeks. The guy said my insurance would not pay for the continuous glucose monitor. He said I would be getting a Revel pump. Not sure which model yet.

So….things are theoretically happening.

I have felt like crap all day. Partly from the mold, part from the gut problems. My lymphs and hernia are swollen tight. I feel like barfing. After this morning, I never left my apartment again. My energy was used up by going to the park.

I have big questions about the algae bloom going on all over Utah. I wonder if it could somehow be affecting me? If there’s something to cause sensitivities, it’s usually me it happens to. People say they have never seen anything like it in their lifetime in Utah. It can kill pets and livestock…and presumably people.

I don’t even need a reason. I just feel awful.

flare

 

Woke up hypo…again

I really, really do not understand my blood sugar…at all! It seems to go both high and low with no relation to what I ate or how much or what kind of insulin I shoot up. I sure hope the blood tests yield some clues! I hate being hypo like this morning😦 I wake up all weak and shaky and confused. Even after drinking some chocolate milk to bring up my blood sugar, I shake and am weak for hours.

I was good today:-) I made some food for a few days. Did more beef stew. This time 2.5 lbs of potatoes, 1 lb fresh carrots, .5 lb mushrooms, 1 lb beef stew meat, a can of diced tomatoes, can of cream of mushroom soup and spices in the electric pressure cooker.

Then I did my usual sort of breakfast mix in a cast iron pan. 1 lb sausage, 2 onions, 2 green peppers, 3 tomatoes, 2 zucchinis all sautéed together. Then for each breakfast I scramble a couple of eggs, add a few scoops of this mix, sprinkle with mesquite maple seasoning and put cheddar cheese on top.

That took every ounce of strength I had. After eating a bowl of stew, I napped for almost 4 hours. Ironically I hate eating. I was doubled over in pain after the stew. That’s why I got flat, put on the CPAP mask and breathed oxygen…then promptly fell asleep. I slept 10 hours last night on top of that. Sooooooooo sleepy…

Even though I count carbs, shoot up 30 ml of Lantus and use my sliding scale for Humalog, my blood sugar goes high. It was 230 after my nap. Sigh….

The endocrinologist says I am going to need a smartphone. I told her I had a computer. Nope, I need a smartphone. I have been studying up why. I guess the answer is the continuous glucose monitor. The info from that is supposed to go into the cloud so any one of my docs can look at it any time. Make that a dozen sighs….

That means I have to buy a phone and get a plan. I guess I would go back to StraightTalk. They now have 10 GB of data for $55. That’s cheaper than my internet. Time to dump Xfinity and switch to a mobile phone again. Who knows how many months until Google Fiber gets online? Then I get a free first year from Google and can use my chromebook again. So….time to shop for a smartphone with my vast income. Uh, huh.

dexcom

Actually, the technology is pretty interesting. The CGM tells the smartphone what’s going on. Read this! It’s incredible! Then four times a day I have to manually test my blood sugar to make sure the monitor and my insulin pump are not malfunctioning. There are all sorts of scary scenarios. Sometimes the pump accidentally sends a huge bolus of insulin and a person goes hypo. Sometimes the pump automatically suspends itself and gives no insulin, making blood sugar go high. It all blows my mind! so much to do and to worry about😮

meter

The manual blood sugars can be added manually to the cloud, or there’s a doohickey to plug into the phone that uploads the info. This all feels very space age!

insulinpump

Ohhhhh….crap! Looks like the best only smartphone to have for this is an iPhone. I’m still freaked out about having my last one stolen. I think about that every single time I go into Deseret Industries😦 Disabled people need to be a lot richer! So, besides an iPhone, it costs $99 for the app! I wonder if I can talk the company into giving me the app for free? I think they should throw in the iPhone, too:-)

As soon as insurance approves my pump, I will be meeting with the Medtronics nurse who will hopefully be patient with me and teach me all I need to know. Maybe she knows ways to get what I need free or cheap? I’m going to try not to worry about this until I learn more. Sigh….

My calendar says no appointments this week. That usually means I end up with lots of them. I do know I need to go to the pharmacy a block over for some med refills. Oh, I need to go to the cancer hospital for the port flush I keep forgetting! See…filling up fast. I hope my new chair is ready this week!:-)

I cannot emphasize it enough. I have been forgetting, well….everything. I stumble around the apartment, clueless about what I am after. If I start to do something online and I get distracted….poof! It’s gone from my brain. And I keep trying to research more about my family tree and my DNA. I’m lucky if I can do that for a whole 5 or 10 minutes straight. Sigh…..

moment

My mind is getting me in trouble

It’s a very unattractive part of me. Been having a big pity party today. It’s hard to correctly regulate my blood sugar. I alternate between being afraid to eat and not giving a darn what I eat. Truthfully…it hardly seems to matter. Then, when I eat anything, there’s a lot of pain from my hernia. I am having more pain on my left side as the intestines try to creep across the vertical line from the incision. I go for hours with the hernia as tight as a drum. Then something changes and I can pass gas again. It’s one of those highly underrated things…until you cannot do it.

focus

My eyes have been very, very blurry for days. I try to read for a while, but all the words are like a watercolor painting that got more water splashed on it. Words just swim together and circle the drain. I return to my default. When I am too sick and/or bleary eyed for any other activity, I sit very still and play solitaire on the computer. I cannot always make out the cards, but I make guesses and restart play a lot.

NeedAHug

I get to thinking about what I have done in my life, what I wish I were doing now and what it is that I would like to happen in my future. I blame a lot of the bad stuff on money. That usually feels like what is keeping me from following my dreams. Now that I have that card from the library to go to some museums for free, I realize the bigger constraint is my health. I hardly ever feel OK.

scapegoat

There are always what feel like a zillion things wrong. My head hurts, my guts hurt, I’m stuffed up, both sun and fluorescent lights make me sick, I am weak, it’s hard to breathe, I need to go to the bathroom a lot, every muscle and joint hurts like heck, my lymphs are swollen, it’s hard to see with double and blurry vision, and I just plain feel like I have a bad case of the flu 24/7. Sometimes money is just the scapegoat. I think of it as always the reason because when I feel OK and want to do something, I have no money to do much of anything.

stop

I blame my body, but I don’t blame my flesh and bones…at the same time. There’s just so much that a person can hate themselves and still live with themselves. I hate all the diseases and imperfections and infirmities! I realize that it’s easier to blame lack of money than lack of health for how I feel. In reality, health and money are closely tied together.

if

What if I had been able to go forth and use my college degree? What if I cut through all my blustering about how I did alright as a disabled farmer and really admitted that the whole thing sucks? Maybe I did want to be smart and famous and rich? On a bunch of levels, it would be easier for me if I just let go of all the defenses and things I hide behind.

masquerade

Gosh darn it!!!!! Maybe I wanted to be normal? I wanted to have an easier fit into the world. I had plans and aspirations! I did not want to spend my whole life struggling with self acceptance. It’s easier to blame my lack of money than my lack of health for most of my shortcomings. After all, I could somehow make some money, be given some money or even win the lottery. It’s a lot easier to hope for money than health.

oversimplification

Sure, I have always hoped for health…and more often than not I have done all sorts of things to chase health by living right, eating right, dealing with my emotions, keeping informed, etc. But the truth is, it’s not all in my power. There is no cure for autoimmune diseases. I can mitigate some of the effects, but I cannot staunch the flow or progression.

chronicillness

I regularly have these pity parties and epiphanies. I feel enlightened for a while. Then I slide towards hopelessness. Then I get more spiritual and uplifted. Then I crash. On and on it goes. No matter what, I am still sick.

odds

Lately I don’t even have time to learn about and get treatment for all my problems before the next one comes along. It’s a very steep learning curve to learn about the various treatments for Dupuytren’s contracture. If treatments are not of the right kind, in the right order, there is no going back. And….if treatment doesn’t start soon enough, usefulness of the hand is gone forever. It’s incredibly complicated.

Now my diabetes has gone from a nuisance to life threatening in the blink of an eye. I never appreciated high blood sugar until this month. Lows caused by malfunction of the pancreas or too much insulin is a medical emergency. Going from Lantus; to Lantus and Humalog; to needing an insulin pump in a couple of weeks is another huge learning curve. Mistakes could kill me. No pressure there! People have to be wearing and carrying a whole lot of back-up and emergency supplies.

Success

I hope the above quote is true! Each time I think my illnesses are overwhelming, more is piled on. Oh, for the days when my biggest struggle was trying to get IVIg. Actually, it still is the biggest struggle. Thanks to no IVIg, I have to take steroids and the Medrol is making me rounder and more acutely diabetic😦

strong

And last but not least, Friday night’s sunset…a lot like sunrise, but in a different order:-)

sunset

darkness

keepingwatch

dayisdone

The best part of the day was sunrise

We have had day after day after day of blue sky, few clouds and glaring sun. It was nice to have some clouds:-) Here is how it unfolded this morning. The last pic was taken outside.

 

earlysunrise

lighter

Broody

lightersky

puffier

little clouds

from outdoors

Last year it took me “forever” to figure out it wasn’t rain or birds doing things on me. I was just as slow this year. It’s bizarre! All of the sudden sweat comes out of my pores in a fine, high powered mist. Depending on the moment, it’s either like going through a mister, or having actual rain drops hit me. When the sun is shining on my skin, the sweat feels cold.

Today was the third time I was in either a store’s cooler or going down a refrigerated aisle and sweat was popping out of my skin and instantly forming rivulets down my head and neck. Very weird. I just feel super hot no matter how cooled down I get.

At home, even with the A/C going full blast and the big box fan pointed at me, I randomly break out in that sort of sweat. To me, it doesn’t feel like a hot flash. It’s soooo not a flash….it lasts a looooong time. What the heck is that about?

This morning at 8:05 I got a call from Lily pharmaceutical company. My pharmacy had given them my #. Something about the time and the woman’s voice made me want to do bad things to her. I would have preferred an email any day. Now I can’t even remember what she said.

I was stuffed up and miserable from the mold, so was glad to have the excuse to go grocery shopping. I went to Smith’s and Trader Joe’s by chair, spent money, and came home by chair. The poor wheelchair! It squeaks and groans, the tires spin, it bounces and the battery is good for shorter and shorter trips. There was no word from the wheelchair people, of course.

In the afternoon I got a call from the Medtronic teaching nurse. She was nice and did not creep me out like the pharmaceutical woman. She was tentative when she asked how often I take my blood sugar. I told her my doc is always grousing at me that I test too much. She liked that answer. I need to test 4 times a day with the insulin pump. She thought it was going to be easy to get approval from my insurance company. Where have I heard that before?

restasis

 

I saw my neuro-opthalmologist on May 2nd. He prescribed Restasis again. Every couple of weeks I would call the pharmacy to ask what the holdup was. They kept saying my insurance had not approved it yet, but they would send in another request. Then this week, the pharmacist said it was denied. I contacted the  neuro-opthalmologist and within 24 hours, the Restasis was delivered. He did not know it had not been authorized. He said the nurse dealt with that. Everybody blames somebody, it’s never anyone’s fault. Sigh…..

vials

The pharmacist told me the Restasis was around $700. That makes each individual vial around $12 each. I need 2 a day. The price of pharmaceuticals is nuts!

By this time of night…every night…my head is about ready to explode.

boom

I turned off the phone and napped

napattack

Now that I’m awake, I keep wondering if the maintenance man came back like he said he would, or if the pharmacy came to deliver the endo’s scripts or if the wheelchair people or insulin pump people tried to call. With my phone off, will it still do voicemail? If so, nobody contacted me for anything. And….I am still tired, weak and allergic to my apartment. Sigh…..

mg

I did a heck of a lot this week, compared to my usual. Thank you steroids:-) But it leaves me feeling exhausted at the cellular level. I might rest, but I just don’t feel refreshed and renewed….and I want to do stuff tomorrow!:-) I get my food stamps on Friday. That’s my once a month holiday. I think I spend half of it on condiments…seriously. I buy several kinds of salsa each month…like chile pepper, tomatillo, fruity, etc.

snap

Hmmmm….how to spend my $98? Salsas, honey mustard, Carolina bbq sauce, Sriracha bbq sauce, frozen pepper strips, sweet potatoes, mushrooms, pickles, cheese, fish, berries, avocados, grapes, chicken burgers, bacon, green chiles, jalapenos, cream cheese, some sort of sausage, cherry juice, assorted fruits and that’s all spent. It goes so quick!

sorry

I thought I had a huge supply of peanut butter on hand. I have been eating way too many pb&j sandwiches for the last couple of months because they are quick and easy and the pb was free. For a while there, we got a jar of peanut butter every month in the food bank boxes. We are back to slim pickings in those boxes. I’m actually eating up the backlog. Only one jar of pb left. This time I got canned fruit, canned corn, 2 small cans salmon, jug of orange juice, bread, eggs and the boxed milk that I got from the free table. I gave back a bag of dried beans, a box of spaghetti, 2 cans green beans and a can of Vienna sausages. Yuck. I almost never eat pasta. If I’m going to chow down on carbs, that’s very low on my list of enjoyable foods.

counting

And speaking of carbs. I am realizing I eat a lot more of them than I thought. When I ate low carb, I only had to know the carb counts for the permitted fruits and vegetables. Now I have to learn carb counting for all the carbs I eat these days. I’m supposed to be shooting up 2 units of Humalog for every 15 grams of carbs. A banana is around 30 carbs. A cup of sliced strawberries is only 13 carbs. A cup of blueberries is 18 carbs. Important info for my Hawaiian ice machine:-) Let them eat ice!

cooler

Ahhhhhhh….I love driving my power chair into the cooler at Costco….and then just sitting there:-)

mastadon

This cracks me up. Whenever nurses ask what meds I’m on and I say Mestinon, I often hear them say WHAT??? Mastodon?? You take mastodon?

morningmeds

Here are my morning meds. I take these, measure my blood sugar, go to the kitchen to shoot up 2 kinds of insulin, I mix Miralax into a small amount of juice and down it with a probiotic. Fun morning stuff😛

mestinin

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