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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Friday

 Husband received vaccine #2 and is very fatigued so no golf today.  I'm sitting here after talking with Carole, making plans for dinner, and adding Voltaren (thank you Amy) to my list.  My brother was told to use Tei-Fu Muscle Recovery Lotion, all natural, for his neck problems and is very pleased with it.  Not for pain, but muscle release.  

The nurse caring for Carole came to her bed after hearing her talk.  Most times she is reciting a vivid but not often appealing dream.  No, she is not leaving ICU today or tomorrow.  I was again giving wrong info to everyone on the list, including the patient!  She is in xtreme pain because of a clot in the already painful and swollen left leg.  Fentanyl lasted an hour (then what's the attraction?) did nothing, she is refusing OXY.  I told her to try a half dose first with the nurse, if not upset, take the other.  Her BP is 115/54 so they started her on BP reduction meds to find that balance for weak hearts.  Offered iron and blood which were quite low, and I learned something new.  Shaking, unable to find words, difficulty communicating, and thinking you're in the woods were a big concern to her.  Last time this same valve was done, she was tied to her bed and growling.  Not uncommon.  But we were surprised that a test exists to determine mental status of such patients.  Carole had a positive score for ICU delirium and she said "finally, I passed a test". 

Petey continues to not use one leg, I tried to get a closer look and he bolted so I won't do that again.  His heated house may be getting too warm for him, first time in months he chose the white one and we got a midnight chuckle seeing this.  

Have a nice weekend!!

I hope to catch up with posts,IG, and videos.

Stay well!

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Warm and windy

I was scolded by a friend for this post complaining about CC so I removed it. 

I said they are the best in tech, doctors, nurses, and because of Covid they need to have a site with answers for family because ICU nurses should not be taken from their patients for minor questions and test results.  And that would also correct the issues this family had with getting answers clearly reported rather than person to person.  

I don't have the strength to deal with unreasonable hate filled hypocrites.

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 I'm physically exhausted, mentally spent.  Bitchdom's crown gets heavy after months of stress.  Carole is being moved out of ICU tomorrow if there is a room for her in the cardiac unit.  Not much change in condition but still good news.

We have a high wind warning for 2am through tomorrow.  I hope no damage results but I love to hear wind in the calm quiet of the night.  Today I needed to relax a little so along with my sweet tea, I took my sanders outside in an attempt to remove 2" of skin from my heels.  I went back in for more Splenda and ...... 

so there he stayed enjoying the warm afternoon.

As soon as we have more info on Carole I can make a new appt for him.  I found the Temptations Creamy tube Charlotte recommended and I spent over $40 on cans that he ate last week but probably never will again.  He's eating dry food too if I mist it with water.  But whether liquid, pate, or dry, it only takes one bite and off he goes on a bad day.

My index and middle finger are now trigger and no longer bend from weeks of texting on a 2" screen to four people at a time plus typing emails.  I've postponed many doc visits so checking online for a remedy would be my only option.  Yes I will look for a phone but we have a ton of money leaving this spring and a new monthly payment.  Hopefully, a smart ass phone won't be necessary or used to this extent in the future.  

Thanks for visiting with me!

********************

Yesterday was not Monday

Sorry, most days I have no idea.  She made it through the night after what the nurse called an issue, then stabilized.  Her kind doctor called at 10pm yesterday which of course was alarming, but I'm very grateful to her for working so late and still thinking of family.  Everyone involved is hoping her BP rises, but drugs are required to help it (below 95/50).  When she would feel weak at home, she would sit and even just a few minutes would allow it to rise.  Lying flat, no movement for almost a week and it's that low?  What will happen when she stands?  Well, that is not in the next few days.  I cannot imagine four weeks without a shower, hair wash, seeing no family for two, but the absolute worst is lying flat for weeks, spinal stenosis pain, extreme foot pain, difficult to eat, bedpans.  She must remain on that lifesaving pump for ????? requiring this miserable position.  I don't know if I would be able to do anything but send out a grateful cry.  If this continues and the mitral does not improve sufficiently to hold a better pressure, I don't think she would survive another surgery.  During the valve replacement, TEE was repeated and they were pleased to see immediate mitral improvement, but whether it continues will be told in the next few days. 

Excuse please if I repeat myself in posts.  With my dumb phone texts needed typed (no voice) and allowed a max of four recipients in each, to finding a window or yard area with a bar or two to send, confusion and repetition is rampant.  Personally phoning is saved for immediate family, any more fades my voice to a whisper and the grease doesn't help that.  

Minimal work on this, but I am loving the colors I changed so far.  36 PTP Legacy.

Bud ate a can of FF another 1/2 the next day so he's hanging in there.  Won't lick the vitamin gel, cannot hold him to get a pill or anything close to his mouth.  If our vet has trouble, no way I want to risk a bite from that mouth.  Petey is limping again.  And the gorgeous long hair that Chris tried trapping for two months, is back.  

Enjoy your day!  

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So far, so good

 What a day.  Once again, I accidently found out mid afternoon that the TAVR procedure had started before noon without notice to family.  Calls were not returned, her excellent doctor in OR called me for 10 seconds and told me she did well, no intubation.  We know Monday is hectic and honestly, these ICU nurses should be with patients and have a few minutes to rest instead of explaining to so many families.  But after informing them 3 times that no messages or calls are coming to us and verifying the #, a new nurse checked again and it was NOT correct.  Also informed us there is no way she will be home soon, pump can't be removed, BP is too low, and she must remain flat until removal.  Were thankful, and hope she continues to improve without setbacks.

Thanks to you all!!

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Continuing

 Hiya.  My tiny $5 emergency cell phone that is not smart, has been beeping up a storm lately.  Only a few inches, highly sensitive, and crooked fingers of mine have sent an update to Dominos, my landscaper, hair stylist, and possibly a few more that got in the way.  Nothing compromised or names, just brief status.

Carole had a TEE done today that confirmed her previous echocardiogram in more detail.  Her aortic valve replacement done six years prior is the culprit and must be done again.  Tomorrow.  Severity of valve disease is graded 0-4 and her mitral is 4, aortic is 2+, which is a surprise to everyone.  We were expecting surgery at end of week to repair the mitral with a clip in a general anesthesia and intubated surgery which terrified her.  I spoke with her doctor and once the aortic is replaced, they will know within 24-48 hours whether the mitral will need repaired.  If so, it will be done at another time.  All this surprised us because we were told her mitral valve was the predominate issue and for over a year, expecting new drugs to do the trick.  Who knew that a bad aortic could be the cause of a worsening mitral?  In the past.... let's move forward.  Dr. Kapadia at the Clinic is one of the best in the country and when I asked if the balloon will be removed before the replacement, I was told this doctor is so good he will work around it.   All in all, this is a change in plans that we're happy about.  It is not considered surgery since no intubation or heavy sedation is required as with the mitral, no cutting since it is a catheter through the groin, and we are all hoping this will improve her quality of life.  No visitors and she will return to the ICU after.  It should start around noon or earlier and they will call when she is recovering.  

I hope to get a few stitches in this evening and Mark will go out for my RXs.  I won't be leaving the house. 

I've not been taking time to enjoy online photos and blogs so I apologize for not keeping up.  I did happen to see a NWP post with a lovely sampler (Cordelia Ransbery, Samplers Remembered) so immediately looked for it and thank goodness I enlarged the screen before ordering.  House fill and motifs are over one!!  My eyesight has worsened and I need to see a new doctor, haven't purchased a new mag light and the arm of my Dazor needs adjusting.

I hope and expect to post tomorrow evening that all went well and Carole may be resting at home this weekend.   Although traffic and multiple lane highways are white knucklers for me, I will certainly enjoy this one.

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A glimmer of hope

 Last night, Carole called to tell us they were inserting an IABP - intra-aortic balloon pump and I'm glad she did.  We did not have any other notification.  A short time later I checked the MyChart site and it was a success.  Mark spoke with her an hour after insertion, she was not as breathless, reduced meds, higher BP, and feeling safer.  But since the phone rang at 7am and we saw it was the Clinic, I have not been able to breathe comfortably and still trying to calm my stomach.  So many of you have also dealt with this same anxiety, third time in six years of fearing these calls for us.  New doctor for the weekend reported that she is continuing to do well, kidney function improved slightly, still seeing things and recites her vivid dreams during sleep.  I talked to Carole this morning, extremely grateful for their care and this device.  She must lay flat for 3 days, very difficult to eat, tubing from it taped to the leg, a few others poking out of neck and behind ear, extreme pain in her feet which no one has been able to diagnosis, but grateful for her misery.  I do hope to hear a strong and sensible voice in another day or two, it hasn't even been 24 hours. 

This device is used for a number of heart issues, such as Carole's cardiogenic shock.  Very often, learning from online sites whether CC, Mayo, Hopkins, AMA, and so many others, is very scary.  There are risks - clots, strokes, malfunction, but you have a choice to follow the provider's advice or possibly die. We are all relieved, accepting the benefits over the risks, hoping this will give her strength and time for doctors to create a medication plan.  Never knew of this device, and it's pretty darn slick.  It is programed for the balloon to inflate and push the blood flow toward your coronary arteries. When the heart contracts, the balloon deflates and allows more blood to be pumped with less work.  Controls offer testing and needs for each patient, such as reducing the number of inflations or pausing to test the heart strength before removal, and we were told it could stay in for a month.  Finally some hope.  But still cautious and fearful.  The infection is not a UTI, still extreme pain in her feet, no answers on either yet.

Learn more about IABP here

We're not quite as confident and cocky as this guy.  Yet.

Well this is unnerving.  I went to Photo Gallery to upload another turkey, and this appeared on my screen.  Looking directly at me!!!  

Edit - when I saw Robin's comment, I realized I failed to mention the woman looking right at me from my screen is my sister!!  I guess that would explain my shock.

_________________________

 I've never seen this before, but more disturbing is how it just appeared when I opened my photo program, which I did yesterday and it was not there!!  The source is not specified, file location is my desktop  (nothing downloaded at specified time).   This appears to be the foyer in Cleveland, possibly the first visit for ID?  Date shows 3/18/21 (obviously not when created) when she was tubed to a bed in ICU. There was CC website maintenance early morning and the site was down, maybe that had something to do with it.  Bottom rung is where I sit regarding tech knowledge and I'm sure there is an explanation.  Regardless, can you imagine my shock when she appeared on my screen?  Yoi.  Good thing I postponed my heart monitor or it would have sent an ambulance.

In case it is CC property, I plan to delete it from here shortly.

Be well, safe, enjoy your weekend.

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Sun

 It takes a plain critter to eye catching.  Shining a light shows the hidden beauty and these belly and wing colors are the same I chose for the sampler.  Not iridescent like the hen's, but very close. And after removing the miscounted first and only bloom, they will return when stitched again.  

502, 356, 434, 3031, 926

Nit attacked Petey this morning and rolled him, Petey is still cool and holding back.  He is much larger than Nit who is silly to not remember that Petey is why his ear has two sections (one paper thin and the other very thick and hairless).  Bud has not eaten anything in days, fresh chicken puree, alone or added to pate, or the flavor he loved Sunday (so we bought a load) and he won't touch it now.  Have you noticed the lack of canned pate?  All these new items are coming out, almost twice the price, and the dozens in our family over the years would never eat anything chunky, sliced or diced.  Bud bolts and paws at his mouth even with liquid.  He's hungry, but afraid.  Put the dish outside, he'll eat.  Garage, he'll eat.  But after two times of bolting from those locations, he's done.  Mark thinks we should take a chance with the mouth surgery regardless of the dire prognosis.  It gives him a slight chance, rather than none and starvation.  But how could we schedule at this time?  This crisis started weeks ago.

This pig will eat anything, anywhere.

Trying to remove as much aggravation as possible.  My last laptop purchase was Lenovo and I am ready for it to leave through a window.  I have never had a touchpad this erratic, frustrating, unstable, and unpredictable as this one made by Elan.  Tried everything, not as many adjustments as Synaptics, online, emails, tech sites, no help.  Tried following advice for driver and such, worse.  Not a big deal unless you can't handle simple disappointments any longer.  Every time the phone rings, it takes me at least 20 minutes to settle down.  It just did.  Chris called Carole, nurse took her phone and told him she is having difficulty breathing and can't talk.  I handled all her doctors, treatments, surgeries, test results, questions, procedures, spewed blame, criticism, irresponsibility, insults, and demands regarding her proper treatment for 20 years.  And now, I don't have the strength to call the nurse for fear of distressing news, and that is unacceptable.  From witch to wimp.  Good book title.

Enjoy your weekend.

********************

Too shaky to stitch

 I just talked to carole's nurse.  Carole is critical and they said we were called at 5pm but there is no number from the clinic shown on our phone.  So Mark called and verified it is correct.  She said we may get a call during the night. I'm having him take care of verbal tasks because I start crying and no one can understand). They just can't raise pressure and she arrived coherent, mobile, alert, breathing.  Can no longer walk and they (like here) do not know why her feet are so painful and swollen they can't be touched, sharp pains to numb, how this all started.  And now she is immobile, gasping, seeing things, and making no sense.  Matter of days.  I was there with her twice during failure and never saw this.  They have no idea about the infection or where so broad spectrum will be continued.  I asked the nurse why she never had a low BP problem with other infections from pneumonia to cellulitis.  ????  She doesn't want to but informed us that she may call for the balloon pump again, during the night or tomorrow.  The two new drugs (one begins with L another N) to help pumping and raise pressure are what caused her crisis.   Six days of great decline and I know this is possible with heart failure, but so many of my questions can't be answered and that is very frustrating.  Would answers make a difference?  Only for my sanity, not her health.  Best nurses, docs, and hospital, but you have to excuse me after suffering with my misdiagnosis, my father's slow suffocation for weeks when a pulmonologist failed to recognize a pulmonary embolism causing his death,  Chris failing to be diagnosed until 22 for his Type 1 diabetes after many hospitalizations telling Carole he eats too many sweets, my biopsy showing cancer and after ripping out an organ, oops.  This is why I get very nervous when they (even the best) cannot give me a verified reason.  But that's medicine.  More miracles than mishaps.

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Another day

Edit - Spoke with nurse again, now has a fever, no Lasix because of low bp, has not lost any fluid since arriving, and she is talking to deceased family that came to sit with her.

 Hi folks.  I wasn't able to speak with Carole yesterday, so weak.  I just did this morning, she is miserable, very shaky and still weak.  Blazing infection that I saw on her report yesterday (myChart), they don't know where and are culturing today but started a broad spectrum until answered.  I did not know that could cause b/p to drop (70/40) which prevents fluid release.  But her numbers were good for two weeks with no fluid releasing so don't understand.  Meds to raise it are being monitored closely because I guess this affects arterial pressure (which is high) when HF is present.  Her nurse in ICU is outstanding, so informative, and takes her time with your calls.  We still don't know what to expect, and I'm afraid to ask. 

I started the sampler with color changes, have very little stitched, and love it already.

Raining today, the boys are in their happy places, and Missy is somewhere inside making trouble.  Nit is still not happy with Petey and tries to steal his house, but had to settle for the old one today.  Since the weather has warmed, he prefers being outside.

Bud is so very thin, wants to eat, and does get a little in before he bolts.  

Enjoy your day.

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Change

 We're packed and ready to leave, but aren't going to Cleveland now.  She had a right heart cath this morning and will spend several days, tube still in place, in the Heart Failure ICU.   But since there is no chance of a bed in that section for days, she must wait and stay at the ICU she is currently in.  They haven't been able to remove a drop of fluid, still swelling, can't correct the leg blockages until her heart is better.  They don't know if they can help but will try different medications, the first is nitroprusside drip.  No visitors.

Mark was going with me and would have had to stay at the hotel all day, and that will be the case when we get there, maybe next week, if they can help her.  The doctor said once they get the efficiency improved, the fluid should start to reduce.  Her initial visits after the TAVR mentioned the surgical mitral valve repair that would greatly reduce the heart strain, if she can handle it.  We also learned that the TAVR surgery from Cleveland is not optimal.

Your kindness and concern regarding Carole is so appreciated.  We all at some point in our lives need to address loved ones suffering or our own.  Those of us that only have a few remaining, can't seem to deal with it.  My months of anxiety dealing with the incorrect diagnosis really affected me in several ways, and I am grateful that I sought another opinion before Carole's crisis.  All those fears and emotions are now directed toward my sister.  We are hoping to have better news in the coming days, and I will certainly be happy to report them.

I decided to jail all three brats inside since they do spend time here, moved things to accommodate two litter boxes, two trays for various foods, Feliway for the terrycloth beneath Bud's dish which helps, notes everywhere as to which doors are most likely an escape route, Petey's dish sunk into a low crock so the critters can't carry away, supplies and food notes.  The garage is also a good choice if we can add perches to get an outside view.  We'll see what happens.

Decided to take the new chart with us and pulled several additional colors for the border.  Original chart photo and a few ideas for color options.  

I think I prefer the brighter colors but will probably not change the colors in the body.

I was studying Jane Southward's chart.  Did I pay attention to the over one section, usually a feature that removes a sampler from my wish list?  Did not.  IG photos of a new start was so lovely that I investigated no further.  Always an option when it is contained to substitute other elements.  A reader mentioned that she doesn't stitch many reproductions because most have reference to God or religion.  Started me thinking ..... do you ever consider the message/verse in a sampler when choosing?  Would it cause you to purchase or reject?  I have to be honest, I don't care and most times don't even read it until it's in my hand.  But she brought up an interesting question for sampler lovers.  Does the verse influence your choice?

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Restricted

 Helpless.  Incapable.

They have not been able to reduce those 17 pounds of fluid, and have taken her off all diuretics.  Not in her lungs, but unable to breathe with any movement.  No answers.   She saw one doctor upon arrival Saturday, none since.  They told her here that if this is lymphatic fluid from her destroyed channels, not much they can do.  But we still don't know.  

I've been there twice before during her crises, but was not damaged.  My brother does not feel I need to be there until a diagnosis and treatment is determined.  My husband offered to go with me but he would be sitting in a hotel room for days. Originally, he said he would sit with Carole and I could try to calm down in the room when needed.  No.  You must be registered as the only person allowed to see the patient, NO CHANGES.  If he stays here, I don't have to worry about Bud.  Carole told the nurse her son would schedule time off for the procedure/surgery and was told he needs to stay in the lobby and cannot see her.   I need to be checked every time I come in, and also daily at the hotel.  Honestly, if family was permitted to stay in the patient's room as before, they would not be exposed to the restaurant, other visitors, car service, every time they left the room and came back.  To me, that is safer, but not allowed.  I do not want to take an Ativan every morning but I don't think I have a choice.  So the plan is to hope she is given some information today and take it from there.  My family feels I am too fragile, but she is so scared and alone.  Chris cannot take off a week of work but is riding with us to drop me off, planned to run in and say hello but can't.  I don't want Mark driving himself so I'm glad about that.  I need to hear the plan, that they can help her, because if I can't settle my emotions I will do more harm and remove any hope she may have.   Not being vaccinated isn't too much concerning since they are so strict there, but I do not know if I can wear a mask all day, need to add grease to my lips and mouth at least twice and hour which can be done when alone.

Missy and Nit can be locked in the garage for days and cry all they want, food water litter provided by others.  But Bud can't.  He is too weak and eats a tiny bit at a time, the other two will finish it before he would.  Continual coaxing of various flavors throughout the day will not be happening which he needs, but he would be hiding anyway.  I honestly don't know what to do.

To be continued.....

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She's there

 Finally.  The vascular surgeon works with Dr. Estep (her HF doctor), she saw a cardiologist almost immediately, they started working on her after realizing she had gained 17 pounds of fluid since the angiogram Monday.  She called me at 3am last night, could not get the doctor until 6, very sick.  So glad she is there now and will have all issues cared for.  Cleanliness, care, comfort.  Wider, softer beds, privacy.  I told her to lay on that large bed, tell her head to drop, arms, legs, and relax.  Rest.  I have to do that!  You think you're loose and relaxed until you tell yourself to drop it and feel the tension release.

 One visitor only, and I can't stay in the room with her this time.  Hoping to get info tomorrow on their plans so I can make reservations.  The connected hotel would be easiest but there are no openings, we'll plan it out tomorrow.  We would leave tomorrow and just stay as long as needed but these damn brats are the problem.  

Hope to be back with news of treatments that will help and feeling confident.

Have a nice Sunday.

****************************

Gigi R

No improvement in Carole's condition, but no worse which is good, and still no room for her in Cleveland which surprises me after six days. It may be another week.  Chris has been vaccinated and visits several times a day but I am not.   No concern for Cleveland, larger single patient rooms without the parade of people and changing patients at this one.  My sister is good with that because besides her angel nurses, another has been verbally abusive and nasty to several elderly patients and deserves to be thrown out the fifth floor window.  Even without her broom, I have no doubt she would land on her feet.  My brother told Carole to request the supervisor before being discharged.  Filling out a survey after can be dismissed by the accused claiming a demanding and belligerent patient.  But not if the patient reporting abuse proves to be reasonable and sincere during that meeting.

Tried to relax and browse online, always find samplers from Gigi R that I love. I envision Margret Withrow with vivid colors in the floral border, and after seeing a start of Jane Southward, added her to my growing list of more involved samplers that I would love to work on one day.  I've not spent much time online recently so I have catching up to do.  Stitch and Frog shipped these two the same day I ordered and they'll be here Monday.

I forgot to mention something I learned at the pulmonologist's office.  I am still short of breath and although the lingering anxiety is contributing, he said the recent addition of Metoprolol may be the reason.  Did not know this is a side effect for some people and he said many of his patients experience minor to major changes.  My heart monitor appt was moved to the end of month because of the uncertainly of time frames for Cleveland.  I won't see my cardio for the result until April so I'll mention it then.

Your caring and kind comments, emails, and cards have made a difference and I thank you once again.

Enjoy your weekend and stay safe.

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Vents

They are in my walls, furnace, floor, and roof.  Even combined they would not be able to handle what I need to expel.  Thank you for your caring, there is still no bed for her in Cleveland after four days but she is next on the list from her current hospital.  Tonight's IV contained a dose of 120 mg Lasix.  Still not releasing the fluid after her lower angiogram during which her blockage could not be opened (hoping Cleveland can).  To say this is scary combined with heart failure is not even close.  She's been in this hospital for over a week, dehydrated, weak, uncomfortable, terrified.  Am I helping alleviate her fears?  Impossible when I feel like the ground is gently trembling, waiting for it to crack open.

I was devastated and unable to cope with the "rapid onset and progression" of fibrosis by the PA almost two months ago.  Started relying on medication to cope which I received from others because this doctor office refused.  I took it upon myself and called another doctor not affiliated with them, saw him yesterday.  And now, the louvers on my vents are wide open and blowing uncontrollable emotions.

Except for the GGO grouping that needs checked in six months, there is no fibrosis shown on the CT scan.   He just kept shaking his head, my reports in his hand, and was stunned that I had to insist on the scan.  More ridiculous he said, is the fact that she told me fibrosis does not show on a CT, yet she takes the subjective result from an xray which many times can be an error in perception by the radiologist.

I have been in this state of mind for some time, am questioning everything, unable to let go.  I did several weeks ago and was thrown back into that black hole.  No trust, nothing tangible for proof.  Could the PA really be so foolish?  Or did the radiologist that read the scan miss it?  Is this ridiculous?  I am just so fragile and worn down that I can't cope or let my guard down.  I need to snap out of it and be extremely grateful, which is difficult until Carole is out of danger.  

Today is the 20th anniversary of my dad's death because of a doctor's failure, and when I saw that punk in Macy's parking lot a few weeks later, he turned and ran back to his car.  What about this PA?  So sympathetic and sweet, do I tell the doctor how her irresponsibility caused such mental and physical distress?  At a time when I need to function and have some stability, her recklessness took that from me along with ever feeling safe or trusting a medical report.  Or do I just follow her for two months and make her feel the fear and anxiety she put me through?

*************************

My sister

 is not doing well at all.  Transferring to Cleveland Clinic today or tomorrow, Mark and I need to make arrangements but it's difficult with Bud needing constant supervision, the others will be locked in the garage and my brother will have to visit for food and litter. One person was able to overnight in the patient's room before, but when they moved her to ICU I had no where to stay.  A guaranteed room will be easier on my nerves.

I can't even begin to describe the anxiety and panic and stomach upset that's been consuming my days after my last doctor visit, had no idea how much worse it would become.  Thank you for your notes and caring.

I've tried stitching for a moment of calm, but it's brief and error filled.  I do not like this design but since it was started and I don't have to choose linen and thread colors for another, purpose is served.  I am changing the motifs because I don't like several colors in small areas creating chaos.

Elizabeth Roberts - Threads of Gold

Be well, stay safe.

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Never ending

 I thought I was settled, until today's appointment where I was told a mess of nothing.  The fibrosis is at the bottom, the infiltrates are at the top.  One wasn't mistaken for another, I have both, so my bubble burst and I went from fear to relief back to fear.  Still no answers, still no referral from 9 am.  And no Rx for a few Ativan.  My cousin's wife recommended Trazodone which is an antidepressant that helps with anxiety and sleep, non habit forming and without side effects.  Whatever.  If I hear nothing by noon tomorrow, I am calling Cleveland Clinic, this is ridiculous.

Carole is now in the hospital, straight from the doctor office.  She will be there for a while and they are not sure what's going on with her lymphatic system and CHF after weeks of her feet becoming huge.  She does not listen to me, always waits until the situation is severe, and will end up in Cleveland I'm sure.  My untrained but usually correct mind says cellulitis.  Huge water blister and others on toes, painful touch, red, swollen.

Petey has a leg injury that appears to becoming infected, Bud is back in his shell, we have no one to care for these brats and especially when Bud needs almost constant coaxing.  Leaving to stay in Cleveland may be necessary but we'll see what happens.

We have no mail service since the street is blocked but there is a package on my step that I will open later.   I am just spent right now.

I did choose two samplers to start but honestly, I doubt that will happen until some answers will clarify both our ailments.  It's a damn shame I dislike wine and other such beverages.  Someone asked how I tolerate those citrus candies.  They are not chewed, rolled, or in contact with my burning tongue.  Kept between cheek and gum, I can swallow the dissolving juice without involving my hot zone.  And they aren't even close to the acid in fresh citrus.

I have chosen Ann Stone (old R&R) many times but never pulled linen or threads.  Solid color section at the bottom, a small amount of over one.  The other is  Rachel Hyde with that fabulous vine border and line of trees.  It looked large to me but it really isn't.  More over one than Ann but doable I guess.  

I just heard from Carole and she said they may be moving her to Cleveland.  The dentist today told me to come tomorrow afternoon, this cavity is so close to the nerve and it must be covered now.  But I may not be here.  I wonder if visitors are allowed because I would be able to stay in her room and then check out doctors there.  I do not think anyone here will have any answers.

But I have a package and can't remember an order so I best check it.

 

Enjoy your evening folks.  

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