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?

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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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Uncle

 What is the point at which you set a project aside or give in?  I think I learned something about my impatience regarding needlework.  Or maybe not.  But I always prefer to believe I am right.

This small sampler whose body is letters, motifs only at the top, should be quite easy and relaxing.  It is anything but.  So I took the time to examine why I have made so many errors in a tiny space, third time on one motif and it's not even completed.  Never before considered how my attitude and mood related to a project.  Supposedly a relaxing stress reducer, sitting quietly, maybe listening to music or a book.  Not at all if my stress level, anxiety, sadness, anger, worry, fear, or hunger is cluttering the back of my brain whether conscious of it or not.  For me, maybe not for you.  Concentrating on color changes for small areas and motifs requiring focus cannot happen, cannot calm me, cannot erase deep seated thoughts.  Right now, I need minimal color changes, letters, verse, recognized repetitive patterns, simple motifs without wandering stitches.  

I had to change thread colors as always to be noticed on this linen color and once again, struggled testing lighter shades that never satisfy.  Seven different beige and yellows were not working and I told Mark to hide the lighter.  Cannot.  Even though the majority will be few colors of eyelet stitches, my frustration with the top motifs have turned me against continuing.  Using a single strand on 32 is not my favorite and two was very heavy and awkward.  So I am moving on.  I need something familiar and consistent.

Is there a point that makes you say Uncle?  Is it continual errors?  Too many thread changes?  What does it?  Do you think your frame of mind or current issues interfere with how you stitch?  Or does needlework take you away from it all?

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Email questions and answers

 Hi folks.  Received several emails about products and suggestions regarding my condition.  If you aren't interested in Sjogren syndrome details, or in need of any good products to help with your dryness, no reason to read this post because stitching is not included.

 Part of my anxiety and depression since the first lung diagnosis, is related to dealing with this condition.  It may not continue to invade other organs, or it may.  Lungs are often involved which is one of my unanswered questions regarding my current problem.  But even if it doesn't, this is what I have to deal with every day, forever.  Sometimes, although not even close to health issues of others, I just can't handle it.  And this is one of those times. Is this a temporary or treatable condition?  No.  Does it ever go into remission?  Rarely.  Are there medications to increase saliva?  Yes.  Do they create other organ problems?  Yes.  Will I ever consent to another flu shot?  Never.  Can I receive the Covid vaccine?  Unfortunately no.  Am I looking for sympathy?  Hell no.  Just offering one of many reasons for being a crabass, and answering some queries.

I have tried every single dry eye product on the market from $8 to $18.  Because I need to add every 15 minutes, Similasan is the best and even used with contacts.  Homeopathic and not China made, glass bottle.  I need several bottles a week and they are (thankfully) the cheapest at less than $10.   The applicator is a long clear tube making it the easiest of any to administer.  Restasis was useless, Xiidra samples helped but at almost $600 a month and not covered by Part D, out of the question.  Friends on retiree plans from the government would pay $15 and offered to try to get them, but I can't allow that.

Dry mouth (lips) caused from destruction of salivary and other glands, is not the dry mouth you wake up with.  Your mouth feels like it's glued, your teeth feel coated and filthy in need of brushing, your tongue is full of deep fissures and constantly burning.  What you feel when that hot cheese on the pizza slides off and burns your tongue, is 24/7, every day.  Eating is no longer enjoyable regardless of the food.  Everything that touches my tongue creates a more intense burn except for watermelon and ice cream.   Salad dressing, fruits (even apples), some veggies, carbonation, chocolate (!!!!!), condiments, my beloved spaghetti sauce, and so much more is off limits.  I will never give up pasta so I have a product that contains Lidocaine and coating my tongue before eating is necessary.  Cheese, bread, and soft products adhere to my cheeks, teeth, and even with water just don't release.  Water does not have the properties of saliva, but I can't swallow without liquid.  Anything harder turns into what feels like a dried up cotton ball.  

The products I found to be the best are shown.  Xyligel is soft slime and the best, applied several times throughout the night.  Not good for daytime because it is not clear and quite disgusting if you're talking to someone.  During the day, Biotene (clear) is used but burns a little.  The GUM Hydral really burns and I won't be purchasing it again.  Relief lasts for less than 30 minutes.  Usually 4 tubes a week are used.  The discs and lozenges are not used ever since one dislodged and went to the back of my throat in a store.  

My lips, which stick to my front teeth, are unbearable and feel like burned leather.  Using Aquaphor and other mostly petroleum products creates a rash around the edges.  Chap stick type products including O'Keefe's guaranteed to last all day stick, do nothing.  When the glands are dead, there is no moisture at all inside, no external product can help restore moisture.  I looked into the plasma injections but the doctor said the increased platelets would eventually die.  Lip injections/fillers would help appearance, but quickly be absorbed.  And hurt.  And cost a lost.  Hyaluronic acid attracts moisture and since there is none, those injections would also be futile.  For night and throughout the day, the Cerave healing ointment does help with the splits and was my dermatologist's recommendation.  A product I found online (Ulta has it also) is in the men's line of Jack Black products, Intense Therapy lip balm ($8).  This is the only topical that soothes without feeling heavy.

So there you have it.  I hope it explains why products are only temporary soothers.  I must mention that a wonderful stitching bud sent a large package of treats and they are the best hard candy I've ever had.   Between cheek and gum, very enjoyable!!  These two treats are now on my Amazon list.  Thank you so much Ann!!

Hope your weekend is enjoyable!!

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