My Sanity Needed Vents

[KarenK]

I'm not much of a wine drinker, but maybe I should acquire a taste for it. I might be able to sleep at night like normal people. Kay, I tried a couple of inhalers that my doctor gave me, but honestly they just made it harder to breathe and I coughed more. It mostly just happens when walking a distance or exerting myself like cleaning house. There are times I can't breathe lying down. I'm usually okay sitting down. I do a lot of that, probably too much.

Gwen, like me I'm sure you learned a long time ago never to say "What next?"

 Bummer, Bummer, Bummer! Hope you're able to get it fixed soon and that your car is not trapped inside.

[widow'15]

Seems like all of us are having "Murphy's Law" issues:

Marg:  As you drive your sister to her appointment fearing floods.  Hope you both arrived safely and are home by now.

Gwen:  Good Luck getting used to your new routine.  Hope the PT nurse found you capable to take care of yourself in your home.  You seem to be managing although I know it is not an easy task.  The other night during a wind storm I lost power and as I rummaged around looking for candles I could only worry about what would I do if the power was off overnight and I couldn't get out of my garage to take Maddie to her appointment.  I know there is a rope that one is supposed to pull, but I don't have enough strength to open a jar of jam for my peanut butter sandwich, how could I possible pull a rope to open a garage door?  Hoping you find someone to repair your garage door.

Kayc:  As you look out for your sister's COPD issues. 

Karen: Hooray for being released from jury duty - you are the lucky one at the moment.  I totally understand how it feels to walk those long hallways as well as driving any distance.  Each time I go out anywhere in my car, which is seldom, I say a little prayer that I will be able to find a parking space close to where I need to go without a lot of walking.

Best of Luck to all of us : One Day at a Time.   Dee

[kayc]

Dee you're not alone, I don't have any strength in my hands due to arthritis and carpal tunnel, it's way worse this year.  I'm having difficult rounding the corner of the ramp with the wheelbarrow of firewood, have to take more trips with less weight on them now. 

Karen, mine is from Asthma so not as bad as my sister's COPD, I'm worried she will die from not being able to breathe, that's how bad it is.  I can't believe her husband hasn't done anything but she's always handled stuff so he's not used to it...but then her way is to bury her head in the sand and put it off, look where that got her.  His way is to tell her she needs to quit smoking, which she adamantly refuses to do.  I've never heard her sound so bad before.  He should pack her up and take her to the doctor!  He has more sway with her than I do, she's bullheaded...but I love her and don't want to lose her.  I've been on my inhaler since before George died, I was getting winded walking up my driveway to the mailbox, at least with it I don't have that anymore, although I only take it once a day instead of twice because the cost wouldn't leave any room for my other Rxs because of the "Medicare gap."  I can't afford to pay 51% of $900 each time I fill the Rx!

Gwen, I hope you slept in today.  Do you live someplace you could order takeout?  Wish I did sometimes!

 

 

[Gwenivere]

Lots of places to order from.  I want a real meal tho.  Way to weak to do it myself.  Tried to pick up after the dogs again and couldn’t effectively and got crap on my hands.  Mailbox was tripped accidentally so that was an added walk I didn’t need.  Both the facility I was at and my insurance want to know how I’m doing.  Pharmacy holding meds I have to pick up or they will restock them.  I just want to scream.  Dog needs meds too, go get them or pay $15 to send them which is robbery.  2 pill bottles don’t cost that much.  

A nurse came out to assess me for in home PT and OT.  The rehab place I thought wanted to help, butit was a survey.  Don’t know when I will hear about the in home stuff.  Guy is here fixing garage door.  Another huge bill.  Sliding door tomorrow which should be less.  I’m so tired of waking up practically suicidal and in pain knowing it’s another day to drag thru and wondering if I will ever get back to a non medically centered existence.  

[widow'15]

Gwen:  Here I go giving you information you may have already thought about.  The last time my daughter visited she was walking Maddie in my neighborhood and got into a conversation with a Uber Food Delivery person.  I had never heard about such a thing so was intrigued that you can get meals from a restaurant delivered by Uber.  Am assuming it is more pricey than a drive thru but might fill the bill once in awhile.

Also, just today I ordered some meds for Maddie from Chewy.com.  If your dogs need ongoing meds this might work for you.  You order on line, provide the vets name and address and once prescription is approved by vet, the meds are mailed to your home.  The first time I ordered I was surprised how quickly I received the prescription and it was actually cheaper than purchased from the vet.  Just suggestions for you.

Keeping you in my thoughts.  Hugs, Dee

[Margm]

Okay, don't want to gross anyone out, remember I live in Louisiana, but when Billy had two yellow labs, he would take the heavy sprayer on the water hose and break up dog poo in back yard.  I know we had the prettiest green grass in our back yard of any on the block.  (Again, don't gross out), I would imagine where y'all live the outside hose is now in the garage to be used in the summer only.  My friend who had two Rottweiler's did hire a person that came around pretty often to clean up after her dogs.  This was in Albuquerque and the "yard"  (tiny patch) was sand.  The dogs liked me but she did warn me not to stare into their eyes.........I didn't.  

[Gwenivere]

thanks for that info, Dee.  I had to go out and get RX's or they would have put them back, but it took a lot of concentration.  I like the Chewy idea for meds.  Hopefully I can get more recovered to get more meals on my own.  Lord knows I have to get out of this house once a day.  Now that the garage door is fixed, I can see whet I need from the Dollar Store.  May need to stock up on green beans for the kids too and that’s a heavy task.  On day at a time they tell me.  I do have a poop person coming next week, hope that works out.  Have to contact my accountant for a money infusion.  So much stuff I never planned.  Just so glad to have my wine back at bedtime.  🍷

[kayc]

Gwen,

You are making giant strides taking care of stuff that just the thought of doing would sink someone else, I'm impressed and you should be proud of yourself!  You are getting things done!  Did you ever find your comforter?

The chewy.com suggestion was great, never knew they did Rxs too.  I can only get Arlie's, now Kodie's food from Costco, the rest I cooked for Arlie.  My grocery bill has gone way down.  It's gone down more since doing Keto.  I don't think I'm eating as much.  It was a huge adjustment but the hardest part was making up my mind.

Not sure why the locksmith wouldn't fix the lock on my patio door but the steel rod has worked fine for years now. 

Got the guy coming to look at the gutter situation tonight.  Always something, isn't it!

[widow'15]

13 hours ago, Gwenivere said:

Hopefully I can get more recovered to get more meals on my own.  Lord knows I have to get out of this house once a day.  Now that the garage door is fixed, I can see whet I need from the Dollar Store.  May need to stock up on green beans for the kids too and that’s a heavy task.  On day at a time they tell me.  I do have a poop person coming next week, hope that works out. 

Just so glad to have my wine back at bedtime.  🍷

Gwen:  Good to hear the garage door is fixed and you have found help with keeping yard picked up.  That will give you some needed rest.  Within time you will be able to do it on your own if you want.  Like kayc said, you are making GIANT strides arranging your new routine.

Oh yes, "One Day @ a Time" and I might have to add a little more to my "One Day @ a Time and Do At Least One Thing Each Day".  Unlike you, I dread having to get in my car and leave the house on any day.  But, there are always those things that can't be shelved too long.

A dear neighbor who recently moved from the neighborhood,  always had her glass of wine for "medicinal purposes" before bedtime.  Whatever works to keep us able to move forward, and I think a good nights rest is the only way to function.  Hugs, Dee

[Gwenivere]

Another assessment today for a person to come in and help.  Can’t really think of what I’d need except piggy back rides to stop the pain walking.  🙂

she thought maybe only once a week.  The only thing I haven’t tried is laundry and will have a try at the after my housekeeper is done.  There are a couple sheets I need to wash and will be a good test.

 I’m so tired of feeling so tired.  I slept last night without moving for almost 7 hours.  Made the last half hour fitful and getting up painful.  Talked to my shrink and this is the first time I need RX refills for my anxiety meds.  Didn’t think it would be a problem, but he wants to talk to my PCP and rehab about the dose.  I read him the doses that are on the bottles I have.  It so adds to stress when things don’t go smoothly plus we had been thru dosages before.  He AGAIN asked about my thyroid, the man is fixated.  I told him my doc doesn’t like these meds and he always assured me not to worry about it.  Well, do much for that.  Now he is a source of anxiety and I have to play along as no one else will prescribe them.  I am angry he has made me feel like an addict now.  He said he’ll let me know in a couple days what he decides.

i am so frustrated that everything is a fight and I am supposed to be resting.  Keep having to call people back for things they say they will contact me about.  I’m not thrilled about starting PT,  but would like to know what they have planned.  The assessor  for home help was shocked nothing was scheduled considering the pain and dependence on oxygen I have now. That should have been numero uno in importance to get me back up to a hopefully functioning level.  I feel like I doing all the work getting things going.   I want some independence backs and have no guidance.  This isn’t my job! 

One more day of people then  break til next week.  I’ll have the weekend as an excuse to be a bum which is how I feel anyway.  How they expect you to stay motivated is beyond me.

 

[kayc]

It seems everything in our country has become more bureaucratic and we have to fight for every little everyday thing.  I'm sorry you're getting grief about your meds now.  Dang, does he really think THIS is a good time for another adjustment/switch?!  That's ridiculous!  Every change adds to more stress.  Even a nincompoop can see that!

Maybe the "helper" can cook, shovel dog poop, do laundry?  When my mom had the offer they would do anything, even shopping.

[Gwenivere]

I guess the point is I want to not need these people.  I haven’t worked with any to see if it helps.  Woman coming today is just for suggestions navigating the house.  

I wrote my doctor about a new medication I am on and if I needed to keep taking potassium with it.  He said take the med, no mention of the potassium.  I also told him I felt worse than when I went in and his only advice was to go to Urgent Care if it progressed. 

Very confused by the shrink and his taking days on the meds.  They are petty substantial meds and he’s never prescribed for me, but maybe when he sees all the records he’ll see I was not making up totals for a day.  I’m just worried he won’t put in the whole amount I used to get which gave me a buffer for very stressful times.  

Just got another call with more referrals for help.  I’m so sick of making calls I just want to smash the phone.  I need a good scream and cry tho they do nothing anymore.

[Margm]

Gwen, I have talked on and on and on about my feelings about doctors.  Still we cannot do without them.  Do they make mistakes........OMGosh, only the older doctors from way back remember their oath.

Medical Definition of Hippocratic Oath. Hippocratic Oath: One of the oldest binding documents in history, the Oath written by Hippocrates is still held sacred by physicians: to treat the ill to the best of one's ability, to preserve a patient's privacy, to teach the secrets of medicine to the next generation, and so on ...

 Now, how do we make them remember this?

You call for an appointment and the first thing they tell you is, if you think this is an emergency call 911.  

If I had kept taking the medicine the doctor gave me, with me begging not to be put on an antidepressant, well, I would not be typing this.  I read that they were thinking about starting back a debtors prison for people who do not pay their medical bill.  We could buy a new house with spending the night in the ER. Well, all mine have been paid.  The doctor that saved my life told me that I scared him.  I realize the condition my condition is in.  But, he definitely realized it, he never had a followup for me.  But, how can I be angry, he saved my life and left it up to me to keep living.  But, he obviously did all he could and was through.  My fever hovered around 101 for weeks.  His answer was "normal temperature for people vary" but he did save my life.

If you do not trust your physician, if you do not trust your medications,, you get a 2nd and then a 3rd opinion.  

I realize Xanax is addictive.  It is the only medication my "condition" can take to even give some control to my Parkinson's--like tremor.  If I have to go somewhere where I will have to sign something, I will take one.  I know they make other medications, but my "condition" is so precarious, even an aspirin will make it where my fever will go up because it will make it difficult for me to go  to the bathroom.  Doctor's do not believe this.  They will give me something that will "stop me up" for more than a day and I'm a goner.

There comes a time when they have got to listen to us.  Our "condition" makes it to where we have to question "quality of life" along with "quantity of life."

If you think they are not listening to you, find a 2nd or a 3rd.  In a city as big as Seattle, surely one will listen to you.  If you think they are not listening, flash that Hippocratic Oath at them.  I have no time left to go to a doctor who won't listen to me.  

 

[kayc]

I hope you're able to get your meds.  Another gal on my other forum going through the same thing.  They proposed her going w/o for four days, this following surgery and her in severe pain.  Sometimes I think they need kicked where it hurts.  Sorry if that offends anyone's sensibilities.

[Margm]

Did not bother mine at all.  Agree. 

[kayc]

I hope you all made it through the empty Valentine's Day okay...George always made a big deal of it and it never fails to assail me with the glaring stark reality of his absence.
V. Day is just not and never will be the same w/o him here.  Came home and spent late afternoon and evening with Kodie.  A friend sent a couple of her dog's toys home for him as she's old and no longer plays with them, Kodie was happy to get something new!  He's good company and I need that being as I seem to be destined to spend the rest of my life alone.

[Margm]

I have developed a brain block against holidays.  I guess I am the original Grinch.  I have my grandma's sensibilities toward holidays.  I do not have enough kids to save their presents and regive them the next year, but my mind sort of shuts off.  The first couple of years I bought cards and signed mine and Billy's name since it was his money that went into buying the presents and cards, but that made them too sad.  So, got my card from my son yesterday.  I did not buy cards.  When we first got married Billy was one of the regular men who did not remember dates and I would have to give him hints way ahead of time.  One year it dawned on me the good qualities he had outweighed the bad and the remembrance of dates kind of died inside me.  It was not a sad death, it was kind of an uplifting feeling.  No worrying about  dates.  But my daughter's husband was typical and Billy saw how much it meant to my daughter and all of a sudden he became a man like my dad.  He remembered dates, he read cards before he bought them, and on our 50th he showered me with surprises.  I should have been more like my old me, but by this time I didn't really care.  I forgot to get him a 50th anniversary card.  Maybe it was intentional neglect, I don't know, but I had adapted the persona of my Grandma.  I still have her.  I hate that.  

[Gwenivere]

The problem is, Marg, is I haven’t the energy to seek new doctors.  I was told today for every day I was laid up would take 3-4 to recover so that makes a good 3 months.  My housekeeper and I just tried to put together those walkers with seats that was just supposed to unfold and couldn’t figure out how to assemble it.  So back in the box til PT gets here and they can do it.  Only outing planned today is for dinner tonight and to cover the weekend.  Made calls to cancel someone coming out Monday for bath help but have heard nothing about actual therapy.  I’m still making all the calls and I’m the compromised one.  It’s so great to see my housekeeper, but I’m in such a terrible mood.  The assessor that was out earlier was a cold fish. (Written yesterday, forgot to post the above)

you summed it up precisely, Kay.  Destined to spend the rest of my life alone.  Makes it very hard to work up energy for anything.  Even at a couple hours away I have no one to go see.  I used to think weekends were the worst, but all day’s blend into each other now.  I’m sitting here for the 7th morning since getting home again wondering why.  It would normally be a volunteer day, but I am so far away from handling that.  Can’t even think of a reason to get out except an early addition on the Sunday paper.  I overdid it yesterday going out and taking a shower.  I just tolerate the time dragging by so I can go back to bed.  Seems I keep writing the same thing.  How do you keep living when it doesn’t mean anything to you?  A buddy in Indianapolis just had knee replacement and is at home with his wife and dogs.  Sent pics of laying on the couch and just working on his rehab starting next week at home, got to skip a facility. He said...I don’t know how anyone dies this alone.  I don’t either and I am alone.  All my leg swelling has returned now that I am up and doing more unlike at the rehab place.  Thought that was gone, but it was from laying in bed with little activity.  The assessor said be patient.  Patient for what?  

I know it needs to come from within, but I keep digging and digging and can’t find a good reason to be here.  When Steve died I wrote a question....how do you go on living when you’re too afraid to die?  Coming back to haunt me now.  Everyone says I sound better on the phone.  They have meaning in their lives, people that hold and love them.  I feel I am just taking up space for no good reason,  not looking for replies, maybe it isn’t right I use this for therapy but it’s about all I have. Have a major fear I will be sent to assisted living.  Oh boy!  The mail is here.  Big doings.

[Margm]

“No one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning. I keep on swallowing. At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says. Or perhaps, hard to want to take it in. It is so uninteresting. Yet I want the others to be about me. I dread the moments when the house is empty. If only they would talk to one another and not to me.” ― C.S. Lewis, A Grief Observed  

Nothing new in that quote.  We all feel it.  The thing was, Billy hated for me to be scared of anything.  (He ought to have realized when I was in labor with Scott my quote, scream, yell, over and over was "I don't want this damn baby").  And a woman down the hall, when I was walking the next day, she laughed and wanted to know if I had had that damn baby yet.  (I've got to say 1962, small country hospital, they induced labor with castor oil and orange juice), we did not have epidurals.  My ancestors might have had 10-16 kids at home, but I was not my ancestors.  It was being a natural childbirth, and I'm not fond of that).

I am a coward.  I am afraid of everything except storms, strangely, I enjoy them.  I'm afraid of where I put my feet, I'm afraid of walking.  I'm even afraid when I go to bed that I won't breathe, and I don't want Bri to find me "gone."  I started to read about "yogic nidra sleep" and now I'm afraid to try it.

Well Billy, how do you like me now.  I'm afraid to breathe, afraid not to breathe.  Something tells me he just does not care right now.  Okay, fixing to go to the store, don't know what store, I will know when I get there.  

Gwen, I just hope you are not in pain, and I  hope where ever I go to the store I don't have a bodily function emergency.  I like being in my apartment, but it is necessary some times to leave it.  My granddaughter does not want to leave it either, and I want to help her so much.  She has a counselor.  He is gorgeous, and she can talk to him.  I look at him and I think "I sure wish I had hormones and was 50 years younger."  ...................not really.  I'm tired. 

[Gwenivere]

The big problem is I am in constant pain.  From the moment I wake up til I go to bed and often it wakes me making it hard to sleep.  I know my outlook would be 100% changed if I could get a break.  I take a pain pill once a day and it helps a bit.  Since they are about impossible to get, I have to rely on Tylenol and aspercreme which do practically nothing.  I see every day what it does to my mental outlook.  When you dread every move you have to make, it creates more exhaustion. It creates the feelings in the Lewis quote.

[widow'15]

Gwen:  Your constant pain will not be relieved by Tylenol and aspercreme.  My 78 year old achy bones don't notice any relief with Tylenol.

My daughter has spent 16+ years dealing with a bad back due to a blown out disc, degenerative disc disease, and two back surgeries where she has had to rely  on heavy opiods.  I know I told you she recently had a pain pump surgically installed into her body.  It has been months of appointments and slow progress coming down off the opiods.  Luckily she has the support of a husband to get her to the point that she has finally been able to actually take a 3 day vacation after all these years.  I understand what you are saying about constant pain - I have watched her live such a sad depressing life for so many years totally dependent on taking the heavy opiods.  But, now she is tethered to this pump that has to be monitored and filled every 3 months. 

My heart hurts for you and hope some solution will give you some relief and soon.  Hugs, Dee 

[kayc]

Since they dole out the pain medicine so few and far between, would a sleeping pill help at night?  If you could sleep through it?  Or would that just make you drowsily aware of the pain?  You need some respite!

Marge, good quote, I love CS Lewis, he's an amazing writer because he doesn't just write about it, he's lived it, he's very real and authentic.

[Gwenivere]

Can’t combine a sleeping pill with Xanax and clonopin.  I sleep, but it is always difficult about an hour before I have to get up because I know I have to get up.  Got myself all messed up this morning turning off the alarm instead of snoozing it so had to turn on my back up for another 10 minutes.  Really makes me wonder why I keep doing it.  It’s just another day of misery.

[Margm]

When I was in the hospital the nurse had pulled a 12 hour shift, on her way to go home, gonna stop at Walgreens for Dramamine.  That is what they all took to sleep.  My daughter has been taking it so long it scares me.  I know too much of it and it makes you have leg cramps.  I don't mix anything with my Xanax but Clonidine, my blood pressure medicine that bothered me too much in the daytime to take.  I asked pharmacist if I could take it at night and she said yes, so it helps, along with the 1 mg Xanax.  Sometimes I dream, but I don't remember them.  If I wake up and go back to sleep, I can remember my dreams, guess that is REM sleep.  

This is up for grabs, I would not drink alcohol and take Xanax.  Lots of people will disagree, but will say it scares me.  But what the heck, I can't drink alcohol anyhow.  

[Gwenivere]

 I do have a glass of wine before bed.  For an hour or so I feel relaxed.  I went 6 weeks without in the facilities no problem.  I didn’t notice it helped my sleep to skip it. That is when I write my list for the next day feeling I can accomplish it without much trouble.  Then reality hits and like today, just a short visit with a gal, light grocery shopping, unloading, changing and feeding the kids have me wiped out.  Shower again unknown to accomplish.  PT just called and was going to come out at 10am Monday.  I coldly reminded them I have told EVERYONE I don’t do anything before 1pm.  I had to live their schedule inside, now they live mine.  I’m tired of being pushed around so it’s easier for them.  They are supposed to help me, not the other way around.  I have some control back now and plan on taking more.  

I had shut the front gate so Ally could go out front.  When I opened it today and came back I could hardly breathe.  My oxygen got unplugged and luckily I found it.  I don’t know what it’s like to not be on a leash any more.  That makes everything worse.  I’ve sat a few times or gone down the hall and loved the freedom.  I still find it ironic that I quit smoking over a year ago and now this.  And it’s not even the smoking that is doing it.  The bronchiectasis is genetic.  Just decided to rear it’s head 2 years ago.  No cure.  Best I can hope for is back to baseline when I didn’t need it all the time.  I’ll take it if I can get there.  Also ironic that this happened when I had rid the house of all the cancer crap of Steves.  Nothing like the hum of a generator to make the place feel homey.  Not.

marg, Benadryl and Dramamine have been used forever for sleep because of the sedating side effect.  They are both considered safe.  I tried a Benadryl once and it knocked me out combined with Xanax.  Never again.  I do believe you are right, REM is when we dream.  Our bodies get paralyzed so we don’t act them out.  Tho some people sleep walk.  I have in the past and woke up completely dressed with no memory of it.  Freaked me out!  Good thing I didn’t try and drive.  I’d hide the keys during that phase.