My Sanity Needed Vents

[Gwenivere]

I’m literally trapped.  There is no one I can find that fits my way of living and I’m not going to change it.  That would be more than I could mentally handle.  Not after decades.  No one I could find who would do everything I need, especially cutting and sorting my meds.  I hope she can thru the liver treatment.  
 

Home Health came out to sign me up for OT & PT.  The ball got dropped on a nurse.  Have to call on a nurse again and my spine doctor dropped the ball on what I'm supposed to do about my pressure fractures.  The pain clinic is really slow to help me with support.  I was given a pain patch, but I'm not putting it on til I talk to the doctor.  That’s a lot of pan meds.  I may need that, but this stuff is different than the oxycodone.  I just don’t have enough information.

Dee was drinking Thursday night.  Too much and became hostile again.  Last night she didn’t at all and conceded this tapering was not going to work.  She did pretty good Friday night.  I finally heard from  the spine doc there is nothing can be done about the fractures.  That is discouraging.  I was really hoping I could get some natural relief.  
 

We’re getting Chipotle take out tonight.  Dinner is so hard with the shakes.  If I can’t hold it.  I want a taco bowl with pork, but will probably get a burrito.  Ah well, it will still be a change.  Take what you can get has to be my motto.  

[kayc]

Do you have Parkinson's or are the shakes a side effect from something?  My hands shake sometimes, mostly when I try to put on my eyebrows, LOL!  Or sometimes when pouring something in the kitchen.  Learning to use a glass decanter that pours rather than level 1/2 cups, etc.

Kodie and I made the 100 mile round trip for groceries/gas yesterday, gas went up of course, so did groceries.  Got enough for a month except most of my meat will get from my freezer which is full.  Spent $100, not bad but for no more than I got...

Snow tonight on as far as they can see...

52 minutes ago, Gwenivere said:

I’m literally trapped.

 

[Gwenivere]

I don’t have Parkinsons that I know of.  Maybe I should add it to the list for the heck of it.  I’m pretty sure  it's stress and the pain med addiction.  This is the worst time ever in my life.  
 

Dee has hep C.  The cirrhosis is a result.  She’s known for a couple years.  This added drinking got he r to this.  I wanted to cry when she told me yesterday and I have a lot of anger to process.  She is extremely anti drug.  Got exposed to a used needle somewhere she was living years ago.   Then she lost her partner and drank for weeks.  
 

I don’t feel right.  Light headed, more slouched, things surreal.    I’m afraid it may be tolerance.  That would be very bad.  Can’t really keep up with things.  Feel nauseous at times.  Had half of a healthy burrito last night, but had no hunger before eating.  In the pit all the time.  My body didn’t really function yesterday.  No digestion activity.  
 

I'm dreading today.  I am putting my oxygen back u as the intake nurse had me turn it down a bit to make my lungs work harder to get stronger.  Not in need of another pursuit.  
 

💕 to you all. Probably a lot of mistakes.  Darned iPad messes p text with short cuts.
 

 

[Margm]

My hands shake so bad that I do more correcting than typing.  I am sorry about the hep-C, have seen it up and personal.  It is a hard fight to correct.  Scott did it, but it was a year of hell, but I think they have newer meds now.  Still, it will be a fight.  I'm so sorry.  He was willing to fight it, if not he would not be here.  My best wishes go with your friend, I hope she has a mind change.  

[KarenK]

I think a certain amount of shaking comes with the age thing. Makes it interesting to try and eat certain things like soup. I'm downright dangerous with a spoon and sugar for my coffee.

[Margm]

Karen, I inherited what they now call an essential tremor.  Inderal helps it a lot but unfortunately aggravates my ruptured colon to a terrible end.  No pun intended.  I have had it a tiny  bit since I was in 6th grade.  My dad, two aunts, and other relatives had it.  My aunt just quit eating, gave up on life period at age 84.  It was too bad for her to put on makeup and she was a beautiful woman all her life.  Her sister took the Inderal and lived to be 91.  It sometimes, if you live that long, goes into Parkinson's disease, and we all know I'm no spring chicken.  Certain conditions make it worse.  

Was not visiting hours when I made it to hospital but they let me in anyhow..  I think they are probably afraid they will have to  make me a bed if they don't let me in.  I'm never mean, but my sister has hit that college teacher attitude because she is feeling better.  They are going to move her to a room tomorrow and then, I'll just bet anything she signs out AMA.  They needed to add some potassium and she was telling them she didn't need it.  I apologized because she is fixing to really be ornery.  I hate that.  That is one thing I don't want to be mean to, medical care workers.  

[KarenK]

Marg, my dad had Parkinson's and shook badly the last few years of his life. Although they dined out frequently, I'm sure it was hard for him. He never complained. From what I've read, it is not hereditary.

Hope your sister calms down and stays put. Leaving too early could be a bad move.

[Margm]

My granddaddy and his brother had it (Parkinson's disease) at the same time.  I worked a few years in neurology when I worked at the teaching hospital.  One of my doc friends said they had probably had a mild case of meningitis or some other neurological communicative disease at the same time when they were very young (big family, naturally).  They said it was not inherited.  Then in 1997, the year I retired, they found a couple of genes that were discussed in a language I could type, but in no way could i understand, and of course it would be prevalent in one parent.  This tremor/shaking they used to call "familial" as passed around in the family, and it was.  This was my dad's dad, he passed away at 56.  I have my dad's Bible and his little shaky notes could still be read in his 60's.  He passed away at 65.  I can write a grocery list, and unless I use each character to make the list, I cannot read my writing.  I do not have the characteristics of Parkinson's, except the tremor, no real whole body shaking.  I do not like to eat out, or around people.  Just another bother, no pain. 

 

[KarenK]

My writing is not affected. It's not a constant shaking, more like spasms that happen at the most inconvenient times. Happens most often when I'm really tired. I usually just use my other hand to steady the bad one. Have never mentioned it to the doctor. I'm sure he'd find some test to run...gotta make those bucks off my insurance somehow.

[kayc]

10 hours ago, KarenK said:

From what I've read, it is not hereditary.

Yes it can be, but it's complicated.

Genetics. A number of genetic factors have been shown to increase a person's risk of developing Parkinson's disease, although exactly how these make some people more susceptible to the condition is unclear. Parkinson's disease can run in families as a result of faulty genes being passed to a child by their parents.

https://www.parkinsonseurope.org/about-parkinsons/causes/

[kayc]

Shoveled snow 8 1/2" yesterday, started 5:30 am and continued throughout the day, just taking breaks.  There'll be more today but Tuesday will be a rough day.  Continues through the week/weekend, no end in sight.

 

[Gwenivere]

 Same here.  Anything I can’t hold with my hands is a mess to eat.  Even holding something isn’t truly steady. Woke up Sunday feeling quite nauseous.  My oxygen has been dropping like a rock with any walking.  
 

Didn’t have my usual Sunday Zoom visit.  Dee has started her alcohol withdrawal and getting cranky.  The war with Robin needs to end.  Van moved by the 9th.  My addiction is getting worse tho ‘I’ve changed nothing,, body wants more.  I couldn't get any help yesterday from the pain clinic.  Don’t know who to call.  The clinic just has a nurse to call.  Always go to the ER.
 

Don't know how I’ll handle today.  The tremors drive me crazy.  Had a hard time eating dinner. Brain is so fogged.
 

I should write one line a day.  It's not getting better.  Just the opposite, and I'm scared.  
 

 

 

[kayc]

Is this Dee's van you're talking about?  9th of March? She doesn't have it at your house already?  I'm confused.

[Gwenivere]

Her van is still at Robin’s house, scheduled to be moved March 9.  That should put an end to this stupid war Robin’s waging.  Then Dee will return the house key.  Make Robin sign to pick it up.as proof it was returned.

 I've spent the entire afternoon setting up appointments and shuffling existing plans around.  Not sure my appointment today will work with enologist.  I've been on hold for 35 minutes which is typical.  Will just try and see if works tomorrow.  I found the invite iin my portal and it would take me now but said my hardware failed.  Hasn’t failed anywhere else.   
 

Sleeping was very bad.  I thought about the ER, but knew they couldn’t stop it.    X'rays would be good.  I could request thyroid level,  but insurance is strict about why you are there.  It would be almost worth it for bone density, but that is a request and turned down.  
 

I'm hoping I feel a bit better this morning.  I don’t like being here, but the ER sounds worse.  I hope I won't have to go and also not miss counseling Thursday.  Shower Wednesday.  Already have an intake Friday that will mess up lunch. 
 

Watched last Selleck movie.  Great 9 ones.  An old  one with Paltro and Douglas now.  

[kayc]

The guy who is supposed to do the fire risk assessment of my place canceled (snow...duh), I sent him a link to my weather with my lat./long. coordinates.  Told him last year we had snow through Mothers Day, May 15.  Good luck planning this.  This is our lives.

I fell walking Kodie yesterday in the snow...hit ice.  Took a minute to give up, Kodie was very concerned and kissed me when I was laying there. He's so sweet! If a puppies kisses could fix things...

I also fell getting down the embankment in my yard last night. Not physically injured but very sore today from the shoveling and falls.  And more snow came during the night...a lot. A lot more coming today. Can't keep up, something needs to give and I think it's me.  I need, above all else, to shovel the 100 ft. path to the firewood.  Will work on it at daylight.

[kayc]

1 hour ago, Gwenivere said:

I'm hoping I feel a bit better this morning.  I don’t like being here, but the ER sounds worse.  I hope I won't have to go and also not miss counseling Thursday.  Shower Wednesday.  Already have an intake Friday that will mess up lunch. 

Hoping with you. I'm sorry you felt so bad last night you considered ER.  What a choice..  

My little sister and her husband went from Portland>Eugene to see his brother, he's been subconscious for days, his partner found him, still unconscious.

Everyone around has troubles, physical issues, my cousin, Dawn is in the hospital, all I know is she is seriously sick, she's ten years younger than me. 

[Gwenivere]

So sorry about your hands and strength, Kay.  Neither of us is forwardly progressing.   It’s so frustrating seeing more limits.  
 

I spent the whole day trying to get all the pain clinic doctors straightened out.  Still not done, but put it in their hands.  Finally got a blood draw scheduled.  The pain just keeps getting worse.  Tremors and withdrawal too.  My endocrinologist appointment had to be voice yesterday.  My counseling looks threatened to be the same Thursday.  Don’t know if I can handle a shower today.  Intense bathroom issues.  Have tax info stacked in front of me to tackle - long questionnaire.  Just don’t care.  Dreading dinner.  Just want to do movie time and play my games.  Then the nothingness of sleep which has been being disturbed by dreams I'm remembering them.

Dee’s watching the Tom Selleck movies she missed and i'm watching a movie I recorded.  I keep some .spares.  Since I'm going to try a shower today, I should try not to do my walks when I get up.  As much as they hurt, to do, i don't like feeling so limited.

 

[kayc]

So my sister's BIL is left brain damaged, unable to speak.
Yesterday my cousin, Dawn, passed, she was 60 (COPD, her lungs were toast, from years she'd smoked). She was my favorite cousin (large family so lots of cousins).  She raised several kids that weren't hers, she was educated and worked a good job all her life. She had to rehome her dog a couple of months ago as she could no longer walk her or take care of her.  I'm heartsick, just reeling from this news.  Yet still I live on.  Sometimes I wonder why, so we can go through this torment year after year?  

I shoveled 5 times yesterday, the whole path takes about an hour 20 minutes.  Got more last night.  No end in sight.  I slept 7 hours 45 min. straight last night, didn't wake up to pee, I must have been exhausted!

I don't get a questionnaire from my place, just need to do up my spreadsheets, which will take a few hours.  No idea how/when I'd get it in there with all this snow.  Sometimes I think the IRS made it way too hard having this stuff due 4/15.  Nice of them.

So my sisters are on me to move.  How, pray tell, would I do that with these hands?  I can't pack/sort, etc, it's been a few years since I could, and it just keeps getting better.  That and I'm not made of $, still have a house payment.  

[Gwenivere]

I read about your losing your cousin in another thread.  I’m so sorry.  I feel the same when I think about what it would take to move.  It took so many years to collect so much stuff.  This isn't like when we were starting out.  In my 20's my 'estate' was rather meager.  We married and started sinking roots 40 years ago.   I didn’t face your weather problems, but I still wouldn’t want to pack anything if I could.  There’s just too much.  I love my home.  It's full of memories that now hurt, but that's the mental rent now.  Even the bad ones because they are of us too.  
 

Was a very long and depressing day.  I did get my shower.  I then tackled my taxes to send today.  I made things so complicated with my messed up thinking.  Made calls. About that too.  Confused myself all around.  Been waking up nauseous.  Can’t get in a usual lunch.  Won’t be able to until Saturday.  Sleep is so dreadful.  Supposed to see a nurse and Jinny today.  Assessed by OT Friday.  Start next with a pharmacist phone call from the pain clinic.  I’m sure my nice looking, fairly clear calendal won’t stay that way.

Have lots of rain and wind.  Hope all rest well.  💕

No edit.  Too down.

 

 

[kayc]

1 hour ago, Gwenivere said:

 I then tackled my taxes to send today.

Ha! Great minds think alike!  I faxed my stuff to my tax person yesterday too!  Last time took them a month, I was jealous, my sister's only took a week. I just hope when they have it done I can make the drive to the valley to sign and pick them up. I wish they were a little high tech, they don't save an electronic version the last few years since their software quit. I told them about Bullzip, it takes one min. to download and you can then "print" an electronic version!  And it's free!  But they ignored me.

Thank you, Gwen, I was totally stunned about losing Dawn.  It's still hard to believe.

I'm sorry you can't eat your lunch, your system?

Less shoveling yesterday but my body is so exhausted and hurting from it all.  I spent seven hours on it Mon. and seven Tues.  It's a killer.  Every part of my body hurt, even still somewhat. Snowing every day as far as they predict.  Ugh. I don't remember getting it every day for weeks on end before.  Usually a couple/few days, then a break.  Nope!

 

[KarenK]

It actually snowed here in parts of the valley about 10 miles from me. None at my house. Have only seen snow at my place once in the last 55 years. I-40 shut down in the north country leaving dozens stranded at least overnight. Glad I'm not there! Desolate area between Kingman and Flagstaff.

My tax return is ready to mail. Can't file electronically because of extra forms required.

[Gwenivere]

I’m not clear on this digital signature.  I guess I did it last year, but I don’t remember.  Seems the actual return would require it.  I got a copy of what was submitted but too lay to drag it out.  I’ll just mail my info and see what happens.  
 

Wasn’t a good day.  Found out this in home care is very complicated.  HAVE to see 2 of the specialists every week.  There are 3.  I thought it would be. More. Lax.  Especially because none are useful for pain.  The pain clinic is hard to get attention from.  My meds are kicking my butt now.  I I know it started when my eating lunch became screwy with lots of medical people coming by or calling.  If I can find the energy, I should make a sandwich before bed and eat soon after I get up.  Deal with the digestive distress as it happens.  In rehab I ate before I got dressed.  I also hadn’t been on the oxycodone as long.  Nor had dropped the dosage.  I don’t do well with constant changes.

Unfortunately that takes itself out in your gut.  So I made a tuna sandwich with some apple nd am leaving it on the kitchen table for when I get up.  The assessment is an hour after I get to the living room.  The goal is to not have the bulk of food so late at dinner.  My meds 2 hours before dinner make me feel sick.  I can’t even explain it.  I’m just tired of feeling sick.

Boring, I know.  Jimmy and Dee are trying to help.  My crossing my trembling finners.  💕 to all.  Open to others hard days p.  If none, I am so happy for you..  

[kayc]

It's 2:30 am and it's already snowed double predicted.  So exhausted physically. I feel it'd take a week to recover with no shoveling...only I don't have that.

Karen, aren't you in Phoenix? I used to live there (albeit short), can't imagine snow there.

Won't the tuna go bad if left out overnight?  I don't understand them putting your through these hoops, Gwen, they know you're in severe pain, how do they think you're going to make these trips in in your condition! 

 

[KarenK]

I'm in Scottsdale on the eastern edge of Phoenix. It snowed about 7 miles northeast of me as well as several other outlying areas of the valley. It has been many many years since it snowed one time at my house. Strange seeing snow on the Superstition Mins but it does happen. I believe it's a record breaking year for snow in Flagstaff, probably for lots of places in the country with these crazy storms.

Too bad you can't store firewood closer to the house and avoid some of the shoveling.

 Gwen, also wondering how you're supposed to manage the specialist visits. Kind of defeats the purpose of "home" health.

[Gwenivere]

It does make it very difficult to accommodate all the 2 clinics want me to do.  Ironically it increases the pain and breathing is worse.  Sitting up for the day yesterday my head was spinning.  Awful feeling.  
 

The rest of the day was mentally dark.  The OT assessment was depressing.  They want to work on upper body strength.  I felt more limited than usual and am.  Replied to a message with the clinic about no telemed with their psychiatrist still insisting in person regardless of how difficult it would be plus it’s not a hands on appointment.  I have a phone call about meds Monday and got a message saying my being wait listed moved to a different time the same day.  That’s just dumb.  
 

Dee and I just sat here most of the evening with nothing to say.  Neither of us has anything to look forward to.  We hate waking up.  The OT guy asked the date yesterday and I didn’t know.  Just March and kinda iffy about that.  I’m running out of things to watch that I have interest in.  I’ve never had so small a Netflix queue.  
  
Off to sleep.  😞