Thank you

 for the emails, anonymous gifts, concern, and prayers.  I thought I would update rather than reply by individual emails (with this hand, once and done), or with my new baby stylus (thank you!) for a phone that needs minutes reloaded.  What a time saver that has been.  Using a precise point instead of a fat bent finger has prevented medical updates from being sent to Dominos, hair stylist, tanning salon, and a few others.    

She has improved and recovered somewhat, in transitional care, soon to be sent to a SNF with extreme pain continuing. I was first asked why I wasn't told that she will probably not survive, and now told if she doesn't take the risk she'll die anyway.  Tact would have been appreciated.  Amputation is an option, wait until bad enough for hospice, or take a chance.  Chance.  But when?  It's a long and tedious route these weeks with no answers.  I am making arrangements for CC procedures, but with their load of patients, it doesn't come quickly.  I've been scolded, insulted, and yelled at by providers and my sister, and I wish there was someone to hand it all to, but there isn't.  Her son has difficulty interpreting as if dyslexia has taken over his entire body, and I am exhausted.  Ativan to help calm the strong PVCs that prevent deep sleep combined with 5am calls from her doctor, has me in bed hours earlier than ever before. 

That shortens stitching time and two fingers flailing like whirlygigs on a shaky hand already saddled with bent and triggered others isn't helping.  Some thread colors were slightly changed in the body, but not by much (darker teal and gold) and I was surprised because the chart photo looks very drab.  I do like my changes in flower color but maybe it wasn't necessary.  Too late.  I want to order a few samplers and Nan's pears are a must have.  Maybe this evening.  So much to do, and it seems nothing is ever accomplished. 

 Never before have I had to do so much in patient progress notes and test results and printing and phone calls and schedules and explaining what happened and asking why an infection can't be identified and how many fissures before your tongue is no longer a tongue.  We can't get any answers on the vascular procedures until a phone appointment on 27th, and take it from there.  I doubt if I'll get an answer regarding my tongue.

I can't believe this is the middle of April.  Petey is low income, no taxes to file.

Thanks again for keeping in touch to send your prayers and caring thoughts, greatly appreciated.

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No words

 Hi folks.  I have no idea when or if I will be back.  I have no idea when my guts will stop shaking.  We were not prepared for this, and have been asked by two doctors, "didn't the Clinic talk to you about her condition?".  No.  Heart specialists, and maybe once it is fixed, you are sent back home to have others treat declining health.

We don't know how this week will end, other than listening to her sobbing uncontrollably in pain begging me for help and I can't tell her there is none.  I can't even talk to nurse or doctor without losing my breath, unintelligible, needing to hand the phone to my husband.  I can't be there, and I hate that, but I can't hold it together and I want her to have hope.  Her son is losing it now too during limited visits.  Grandson tomorrow at noon, and no one else allowed until the next day.   Delirium is making it so much worse, lacking reason, memory, understanding, and thinking no one loves her, alone in a strange room unable to walk.  Why.  

Take care of yourselves.

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Brats

 I will update when there is positive news. 

Until then, here's a few spring brats driving me insane.

Yes, our world has been turned upside down.

Vet was closed for 10 days, and some days our Budman will eat.  I think he is strong enough regardless of failing heart to have teeth removed.  

 

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Saturday

 Wait.  No?  Whatever.  When I don't bitch about snow, you know I'm preoccupied.  So here's some boring bunk from a Saturday before it even arrives.

First and most important, my sister is not going to a nursing home as they said.  Even though our hospital was still evaluating her files for admission (not even 24 hours), they were telling her to choose another because there was no response from here.  Yes there was.  To me.  She waited a full week for a bed in Cleveland while condition worsened, and they can't hold her another day?  Tomorrow at dinner time we will be relieved to have her here, recovering from her failing heart (thank you Clinic), and praying her clots dissolve and do not move.  Feeling better today, actually sitting, she said it is excruciating to have her legs hang but after a week of begging, no pain evaluation, no diagnosis.  We move on.  One day we may find a pain doc locally to help her with what I am 95% sure is CRPS.  Complex Regional Pain Syndrome.  

 As for the elder issue and pain meds, every one of our friends have been livid and dealt with the same issue.  Two of my aunts in their 90's without dementia almost overdosed on heart meds, which family corrected by using pharmacies that offer pill packs and that fabulous clock (I need this).  Pain med monitoring is necessary, but in cases of quality of life for our seniors, essential.

Anyway, I've been rambling for weeks and never had dryness, fissures, and intense burning to this extent.  I had to continually stop and grease my mouth during calls with family and clinic.  The inside of my lips are the worst because that's where speech obtains clarity, but when lips dry, don't move, no one can understand you.

I removed the 420 in the body of Margret after realizing it was incorrect and replaced with the 840 as charted.  I want the vivid border, but the body as it should be.  The darker brown is 3031

This is my tiny phone and without my Penn State nubby (it's what I call them) my fat bent finger that now is a trigger would not be able to get one letter correct.  I need more of these.

And homemade mac and cheese.  Carole likes some gouda in hers, Chris and Mark cheddar and hot pepper, Ron prefers swiss and white cheddar,  Nancy brick and cheddar.  I cant't eat anything but diary without salt or pepper so I guess mine is bland.  I found that pulverizing Tums and continually dabbing on my tongue does help a little but it's very brief.

Peas, mayo, sugar, eggs, cheddar is another staple that doesn't cause more burn.  

I'll be anxious to see what we will be allowed to bring Carole once there.  Her coming home this weekend saved me quite a bit of money so I hope to relax and shop online now that it is all settled.

We've been calling companies for so many things and no one is showing up.  I hope they have more book learning than the customer and cashier before us that took over ten minutes to count paper and coins.  Not for change, for payment.  So ticked off I almost told her I would count it and if she needed more I'd give it.  But Chris's grandson from Pittsburgh gets confused with money, nor can he write, or spell.  So .....

Wishing you all a peaceful evening.

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Wednesday

 You have no idea how many tubes of mouth gel and lip have been used in the last two days, but I've got several more for today's marathon.  Why?  Because the doctor in CC informed me today that at 82, she is too old to get relief from even Lyrica.  Nurse sat and held her hand for 4 hours during the night as she cried (on neurontin).  Chris is going for the weekend and will talk to her, the doctor will only discharge to a nursing home since she can't walk with that pain.  We put in a request to transfer her to transitional care here and her PCP can take over.  

My brother found a large box in his storage filled with magazines from 40's and 50's.  This Valentine one has many labels missing and is quite yellow and in my burning pile, but the two for knitting are readable and fairly decent.  Published in 1944 and 1945, fragile but if you collect such as these, I'd be happy to send them out.  Let me know if you're interested.  samplersandsantas@gmail.com

I am quite upset that I've not worked on Margret, but once these calls and related research is completed, Chris will be with her all weekend and I will focus on my postponed appointments to be rescheduled, contractor for interior, landscaper to rip everything out in the back, excavators to install the new sewer lines, and serious search for a new house.  Considered moving previously, and have to be prepared.

Margret is waiting for me this evening.

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Tuesday

Oh my.  She is slowly improving, we know she will never fully recover but hoping for improved quality of life however long she will grace earth.  It's so upsetting, surprising, and frustrating, with or without advocate.  She spoke with her son twice in two weeks, four times with us.  When she did answer her cell yesterday afternoon with Mark,  he had such a hard time holding it together.  Crying and sobbing unable to catch her breath, tremendous pain from clots in a leg that was swollen, undiagnosed, and painful from the beginning.  ICU managed her pain well enough to be tolerated and

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forget it.  I am so exhausted from searching for help, making calls, now trying to find a hospital sitter which I was told is prohibited.  She is allowed one visitor during her stay, no one can tell her who it must be. 

One of my orders was delivered today and as usual, not as expected.  Zippered pouches from my first order were very similar to todays, a fancy freezer bag with a zipper.  My second order (Sunee) was fantastic, heavy, very smooth zipper, side tab, and if there is such a thing, sensual touch plastic (blue with tag).  The new claim to be Sunee, but are not the quality of the first order.  Returning.  

Finally got wired.  When I first started wearing these I felt like donning a Stetson and western boots while a device larger than my TV remote hung from a holster.  Kept a journal, documented anything that required more effort.  Ya know, like being nice to idiots.  What a vast waste field that has become.  This recorder is only about two inches and is held center chest.  Tight tank tops were perfect for keeping wires secure but all I have in my olden days is a man's undershirt in small.

Thanks for sticking around.  As soon as we get her home (no idea when) this will be the welcome home giftaway.

Have a nice tomorrow.

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