Home, Hospice, More Updates and Revisionist History

There are these little tidbits I’d like to share, or at least pass along. Warning: May be long for some readers.

My apologies for not answering comments or reading the blogs of others, but dope and high fevers will do that to you, if you get my drift. It didn’t seem that my comments were required at the time. As time goes on and my life (hopefully) begins to stabilize I can find a remedy for that omission.

Just as the Flu was making like Sherman in its relentless march through my body to the sea, two new things popped up (no pun intended); glands in my neck and throat began to swell to the size of large duck eggs. Suddenly I couldn’t move my mouth and the jaws wouldn’t cooperate. The mouth felt as if I were chewing on razor blades, all tiny cuts therein, so sipping anything other than water was a no-no. Another IV antibiotic was called in for that one - took 5 days before jaws would move so I could eat solid foods again.

I lived on water, Ensure, Magic Cup, and ice cream. Even cooked fruit caused the glands to react and stung my mouth like hell.

As the neck glandular swelling receded a new pain and swelling in my groin appeared. Ultrasounds, and x-rays later discovered that I have a hernia - again swells to the size of an egg. Have to wear a special belt whenever I am sitting or standing.  The egg disappears into the intestines when lying down and there is no pain. Tempting, but I can’t allow myself to buy into that scenario. I need to regain my strength. 

The Site Meter visit counter died suddenly last December and the replacement is one of those free things that counts every hit, not only  the extended visits.  So, just know that I am not so popular as it may appear.  But you knew that already.

I have to work on the info for the Funeral Home (payment in advance, no kidding) for the what will be done with my remains and the info for the death certificate as well as any obituary I may want to have published.  Yes, all paid for in advance. I guess to prove in some bizarre way that I am not play-acting and this is the real thing.

And speaking of Obituaries - or as in this funny but sad case a pre-obituary - there is THIS revision of history I stumbled upon this morning and haven’t decided just how sick, sad, poorly thought out and written, and over the top it really is. I’ve never read a pseudo-obituary. That said, especially where the writer gives themselves more ink than the supposed subject of the piece. This from a person who lives in the past, loves to play the put-upon misunderstood martyr in all situations. 

In any event, he becomes the larger-than-life martyr with each retelling of this tale (it’s been reincarnated a few times on his blog) because well, it’s all about him, after all. I guess I ought to be angry, but at this stage what’s the point. That would take more energy than being sad for the man, which is more than he deserves. 

At this time when my health is fragile I prefer people in my life who love, respect, and care about me. Unfortunately, this person isn’t one of them. 

Anyone involved in the retelling of this sordid, long-forgotten anecdote (supposedly about the subject of the obit although any connection is a vague stretch, indeed) is either long gone or have long ago forgotten the original childish situation.

Anyway, it could be your laugh of the day.  Your choice.

My walking stick has arrived just in time for my release from hospital. The one I really had my eye on was made in Ireland out of traditional Black Thorn, was a bit expensive and would take 4 to 6 weeks before being dispatched. Of course, I couldn't wait that long, so this one will do me well. In three sections it is quite sturdy and a full 55’ tall when screwed together. It comes with a canvas bag and collapses to 18” sections.  I love the thing. As I said in an earlier post, I didn’t want a traditional cane, but rather a hiking/walking stick for more stability and security. And here it is.

Meals on Wheels will be set up tomorrow or next day helping to provide 1 to 3 meals daily, and the weather is supposed to warm up by week’s end. After being in a germ-infested, temperature-controlled environment for so long it’s taking me a while to get used to real fresh air and the cold temperatures. Truth be told, it’s in the 40s but very cold to my tired emaciated old body.

Every hour I push myself a little harder, a little farther from my comfortable cocoon to do more for myself once again. That under the care of Hospice I get to self medicate is a luxury beyond measure. No more having to wait an additional 3 hours before the hospital computer tells me I can have pain med is a boon to me and all mankind. I don't abuse the privilege, but it's nice to know it's there. 

I just read that Hospice will provide Oxygen if needed, as well as one of those emergency medical alert systems (like that annoying “I’ve fallen and I can’t get up” thing) so I’ll find out more in the coming week as I get settled in to this new living situation.

Just as I wrote that last bit a phone call came in from Hospice - it was a daily check-in to find out if all was well or if anything was needed. 

The fact that I need someone to shave my head (after 2 months it’s very scary) was not included in their offer of aid.  The last time I shaved was before the shoulder dislocation, when I was able to lift my arm above my head…not any more. I’ll have to figure out something else, is all.

Hell, I’m amazed I’m still here and back at my own place, for however long I’ve got.

If all goes well and my strength improves I will be having a lunch of Fish and Chips with a pint of Newcastle Brown Ale with Linda and Jeffrey tomorrow. To say I’m looking forward to the outing would be an understatement. 

“Do what’s necessary, then do what’s possible, and suddenly you find you’re doing the impossible.” Anonymous

Still Amazed.

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This Flu is the Real Deal

This ain't no weekend stomach  virus that everyone refers to as "the flu"  not by a long shot. Lymph glands infected, and other unheardof glands in the throat make eating, chewing, even drinking excruciatingly painful.

Running two IV antibiotics and almost continuous doses of painkillers.  Just another nightmare in paradise.

More about me later, if I've any strength left. Looks like rehab will begin next week, if it happens at all.

Just keep truckin'.

*

Miles and Miles of Heart

Six weeks later, still in hospital, but the anti-fungal has destroyed the heart fungal infection after 6
weeks of treatment. I've been told that most hearts would have just given up and out, but for some reason, I'm still here.

A number of folks I have known in the past have died over the holidays and yet, here I am.

Just began to feel better and now I've got the flu.  Can't seem to win any which way.

The plan is to go into rehab for a few weeks after this flu takes its leave of my poor old wasted body.  We shall see.

Stay tuned.  It's been an amazing ride and it ain't over yet.

Amazed
*

New Year Update

First, thank you to Calvin for spending some time with me on New Year’s Day. It was a very pleasant time and a joy to meet him in person. Hope we meet again under happier circumstances this year.

Fevers are fewer these days.

Meds are fewer now, too. Mostly IV stuff.

When released, will need to be infused daily with anti-biotic and anti-fungal med.

PT continues to help with the walking and stairs.

No need for oxygen right now.

Eating to gain weight - not much success, so far.

Found more PERN books to hold me over and keep me relatively sane. Since I’m awake at all hours, I keep the Nexus 7 charged at all times.

May be out of here before the weekend, but don’t know where yet. Linda returns from Holiday in Ireland this weekend, so I’ve that to look forward to. 

It’s been suggested that I find a tasteful walking stick (not a walker, please!) to help my balance when I’m out and about.  Something to go with my style, you know - - vertical.

Will ask Jeffrey to scope out retailers to see what they’ve got to offer. I don’t want one of those cheap, aluminum medical devices.  Something with a little class that I’d be proud to be seen with in public.

Have met two very nice hospital employees recently. Both Latino and both anxious to talk about being gay in Rehoboth. Very sweet guys. Keep me occupied for an hour or so, which is damned nice of them. One is a CNA and the other works in Maintenance. They say they’ve been praying for me since I arrived last month. Little surprised by those remarks, but I’ll take it.

People never cease to amaze me.

Still amazed.

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Yes...You Bet...

I am awake.

I am in hospital.

I am in pain.

I am aware.

I am anxious.

I have a mild fever.

I am medicated.

I am ready for a nap.

I am mystified as to why hospitals don’t sell health and beauty aids. I could sure use  nail clipper right now.

I'm amazed that it's 2015!

Still amazed.

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Balancing Medical Decisions

The Friday appointment with the attorney had to be cancelled due to emergency transfusion on Friday morning. I am sure she wasn’t a happy camper when she learned that news. Couldn’t be helped.

Went into full crash mode on Thursday afternoon, so when I called the Center for advice, they told me 2 units were already ordered while we were speaking and since I was already in a crash scenario just continue to chill, rest and do as little physical activity as I could get away with until I arrived at the Center in the morning.

That was easy to do. All I wanted to do was lie quietly so as not be short of breath and be as careful on my feet to be aware of any possibility of falling. Took a painkiller and high dose of Tylenol before sliding between the sheets where I stayed until morning when I had the tedious struggle to get dressed (hard enough with the use of BOTH hands, a real torture test without) and try to be ready when Jeffrey arrived to transport me. He did have to help me with the sling (the dear!)

It all went smooth yesterday and though I was, by this time, very weak and finding it difficult to put a coherent thought into words there was no panic. I had enough trouble following instructions and answering questions posed by the staff. I managed.  I now know that I can go from a moderately low red blood cell count to a dangerously low one in less than 24 hours. For no apparent reason and without any change to normal daily activity.

At least I was able to recognize and be aware of these quick changes nowadays. Glad I made the right decision early enough that no harm was done and the attorney couldn't whine about wasting her time.

Also, this latest blood - O Positive with modifiers for me - gave me a positive kick, or booster and I feel better today than I have following transfusion in the recent past. For this, too, I am thankful.  I am not going to be doing anything crazy, but I feel like I could put on my dancing shoes and boogie around the living room for a bit.

I am amazed.

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The Ring Goes South & That Card Again.

I am not sure whether I ought to be spooked, or freaked (2 very different experiences), grateful and curious, or give myself a slap upside the head for missing something important that this card is trying impart to me.

As you can see in the side bar, this is the card of the month - second time in a row. It has popped up as card of the day again today - the second time in the first 10 days of December.  I know shuffling the deck is not an issue. I am very careful with that, almost religiously so. This is uncanny.

Sat up most of the night in pain reading, or trying to. Between the shoulder, left arm, wrist and the leg swelling, painkillers didn’t have a chance. Pain was so intense at times the nausea kicked in big time. Compazine helped - but not with the pain. There was no way to ignore it. 

So I decided to pull my card for today and, well, imagine my surprise when this one comes up again. Everything I read about it points to having a lovely time, enjoying love and friendships, and lots of happy, strong emotions.  

But, while I’m in great pain?  I think not.

I’m more than half way through my annual reading of LOTR - about midway through The Two Towers - occasionally finding a bit of info that I’ve missed in past years, making one more part of the trilogy fall into place. With the arm out of service I’ve been unable to write these down, but I think I’ll remember enough as some of the characters (or their heirs) play a part of the final book.  I’m reading more quickly and more intensely than in other years. I guess I need more concentration this time round to pull me through.

The struggle to put on clothes begins shortly. Jeffrey will pick me up at 8 for a few appointments, then I have a few scrips to get at the pharmacy followed by a CTScan before I can head home and return to the peace and warmth of my bed.

The storm system moving through has me moving carefully and with someone’s help. Can’t afford to dislocate the right arm now. I’ll be happy when the trials and demands of the day are over.

And so it goes.

After the Fall. What Now?

Taking the fall, literally. Typing this won’t be easy, since the left is my dominant hand. In 68 years I neglected the education of my right hand that it is now practically useless. I manage.

Appointment with surgeon is set for Monday hopefully followed by a quick appointment for the surgery.  I can only dream.

Since the fall I’ve noticed that I’m very prone to balance issues - more than I originally thought. With two hands to help keep balance and remain steady, it’s not as obvious. But there are any number of times I could have taken the same kind of tumble here - just not conscious of the danger.  I am now.

The ER doctors kept shooting me up with pain meds. It took three tries and ultimately a call to the Orthopedic surgeon at 1 AM to reset the shoulder. The third set of x-rays he ordered show a piece of bone separated from the main bone, so the surgery.

Of course I was in no condition for Labs on Wednesday. When they were done Thursday the red cells were again down enough for 2 units. Blood was delivered overnight and I sat for 6 hours receiving while very doped up. Back to bed when I got home. Even in the sling the arm is very sore and the hand very weak. 

Though I took off the sling this morning to make a coffee and change shirts, it will go on over a fresh shirt and I will spend most of this 4th day of healing in bed reading, or sleeping. I do not need anything else. Yes, this is frustrating, but it is what it is.

I’m becoming what I wanted to avoid - a burden on those taking care of me - and so I’ve got to pull back some, do more for myself. They’re already blaming themselves for this fall and that will never do. It could have happened anywhere - even in my apartment.

Sure the whole thing sucks wet monkey ass, but it’s done and that’s that.

I am amazed.

*

I Lied. Never Say Never.

Unintentionally, of course.  You see, I didn’t mean to, but I spoke wrote before I knew I had this particular, weighty (ahem!) problem.  Some would say I ought to have known beforehand, but I've had other business on my mind,  dontcha know...Anyway.

There is a disturbance in the FORCE! (Sorry, wrong metaphor.) I found out the hard way that I cannot read the LOTR books. My hands and fingers are too weak to hold the hard cover volume for any length of time. 

The problem may be due to the cancer, causing weakness in joints and muscles.  It might also be the arthritis which I have in both hands. The fingertips become numb on occasion. I can no longer tell if the pain in the hands - like the pain in the legs - is due to the cancer nowadays, or still the arthritis.

I’ve tried reading with the book propped on my chest, but the weight and size are too clumsy and the book slips out of my mostly useless thumbs. The thought that reading the entire trilogy would have to take place sitting at desk or table, instead of snuggled up in bed, was more than I could take.

So, I did what I said I “would never do” I hunted down and purchased the entire trilogy in one volume. It turns out to be a Kindle Edition with surprisingly good reviews. 

I’ve proof-read the first 3 chapters and compared each edition. Though the script of the Elves is very small, so far, so good. The Kindle version is the authorized Houghton Mifflin Harcourt Co. edition.  Total cost was $9.00, delivered in less than 2 minutes, and I am a happy camper.  Now to continue the annual read that is certainly going to take my mind off being a shut-in most of the time this winter. 

Just shows to go ya; never say never. 

I am amazed.

*

From Pain Comes Pizza.

Being a shut in today and that’s OK, especially after such a rough and restless night. Leg and ankle swelling made getting into a comfortable position a physical challenge. I sat up most of the night reading; falling asleep whenever I could.

As it now stands, Ireland is going to be hosting friend Linda another week. The results of the original biopsy proved inconclusive so she had to endure another one, having to wait for these results until early next week.  How the results could be inconclusive she says she can’t understand because the chunk of flesh they took out of her was quite large.

Anyway, she’s stuck.  Be that as it may, she told me this morning that flight reservations are made for next Thursday (our puny Thanksgiving - and what it’s become - means nothing to the Irish) so she is planning to come home no matter what the results of the latest biopsy reveal.  One can tell, even by the written words, that she is one pissed off Irish Lass and most folks would be wantin’ to stay out of her way these next few days.  

Jeffrey just checked in to see if I was in need and if I felt up to meeting him for an after-shift cocktail today. I nixed the cocktail idea but asked if he would deliver a small pizza after work from my fave place. He said it wouldn’t be a problem. We’ll try to meet up for a festive cocktail later in the weekend, if possible.

A fresh pizza - delivered! That’s great! I have no beer, but a shot of Jameson’s might be in order. With the swollen legs, pain and weakness, I couldn’t prepare a hot meal for myself tonight, anyway. I am pretty tired of cold turkey sandwiches, of you get my drift.

A nice reward for putting up with the pain. Pain meds following the pizza should put me down for the rest of the night and I’ll be on my feet (literally) tomorrow morning.

I am amazed.

*

ABBA, Answers, & Baba Ganoush

Greeted the day with little pain and no dizziness. Drank 2 large glasses of orange juice while brewing a coffee. Feeling pretty good today.

The song swirling around in my brain when I awoke this morning was “Take A Chance On Me” once a not-so-big hit by ABBA. Fortunately, the song was included on the one CD I have of the group, so as soon as the sun  came up and I was sure not to disturb anyone, I played the thing just to get it out of my head.

Called the Center today with important questions for the doctors. The nurses in Triage helped me out a lot explaining some of the reactions I am experiencing and can expect for a while, as the body works up to its “new normal”. Then I talked with the doctors.  I took a lot of notes. I had to. As I re-read them they sounded more complicated than they actually are. Common sense stuff, really.  

So now I kind of know what to expect. The reason most of this information wasn’t given upon release is that people react differently in similar circumstances and it is easier to focus on an individual after the fact when they experience specific symptoms. At least that’s what they told me. In other words if it didn’t happen to you it’s not relevant to your situation. So there!

The bottom line is:

Recovery will take a long time.

Expect mild to severe pain at any time.

Take medications on schedule daily.

Get plenty of rest.

Be aware of minor physical & mental changes.

Be aware of internal bleeding.

Watch for external bruising, skin discoloration, and rashes.

Pushing the body to heal quicker can cause a relapse.

Sleep whenever possible.

Do not drive a vehicle until you know you can.

Drink plenty of water.

Eat when hungry. Force-feeding is not good for the body.

Eat what gives most pleasure, on Neutropenic diet.

Eat plenty of cooked fruit and vegetables.

Now, that’s a lot to be conscious of on a daily basis.

The truth be told, if it wasn’t for those three taking care of me from day one out of hospital, I wouldn’t be here now. It really is that simple. And to think that Linda already had an over all plan of care before I even got home is mind-blowing. She’s a very insightful woman.

On a funny note, I contacted the Funeral Home to set up an appointment to discuss my “wants and wishes” regarding a funeral. The person answering the phone couldn’t be bothered and told me to complete the survey/questionnaire at their website. I suppose those close to death or their family members don’t need personal, customer service when a few questions answered online can whip out the perfect service for their needs. Maybe I’ll answer the questions at a later date, right now I can’t stop shaking my head and laughing. 

To brighten my day I just received an email from my Visa Card company offering to turn my miles into gift cards.  Ten thousand points equals a $100 gift card. I think I will choose an Amazon card and spend it on myself since I’ve bought a lot of ebooks lately and there are a few other items I would like to order, not the least of which is proper kilt hose, or socks. With the temperatures dropping and the inability to wear long trousers (due to the leg rash), I think I’ll need a little help keeping warm this winter. Though my legs seldom get cold, my body has changed and ain’t what it used to me. 

I’ll keep - and add to - those points in the off chance that I can use the air miles for an upcoming holiday somewhere away from here.  Hey!  One can dream, can one?

Going to ask Jeffrey to take me grocery shopping tomorrow. I’ve suddenly got a craving for Baba Ganoush. I need a healthy snack to munch on while on the computer or reading. Now if I can find enough energy to prepare it, all will be well. I will use store-bought Tahini, no energy to make my own.

ABBA has been playing in an endless loop in the background all day.  Aaarrrrrggggghhhhh !!!

I am amazed.

*

Healing, History, and Helpful Advice

Having taken a painkiller with the evening meds after supper last night, I brushed my teeth and settled into bed. Started a new e-book on the history of Scotland and got taken away for a few hours before feeling the desperate need for sleep.  Just what I hoped for, anyway. Slept like a baby, too. 

“How the Scots Invented the Modern World” is a surprisingly quick read and - for what it is - extremely easy to follow. I thought that after reading all the Civil War, American Political History stuff, it was time to take a crack at the other side of the pond. I’ve watched the multi-episode BBC series on the subject, but this is quite different.  

I received a poignant letter from a blogger buddy turned friend today, offering much wise advice regarding my physical and emotional healing and allowing time to let it happen. His words ring true, indeed. I need to follow them and think only about myself right now. Listen to my body and not try to rush the recovery process.  I don’t have to force myself to be productive so quickly after what I’ve been through. Feel vindicated in my attitude after reading and digesting his letter. Most of all, there is no reason to feel “antsy” about anything. I must learn how to rest. Now, I have help.

Unfortunately, my new V shaped pillow did not arrive in yesterday’s post.  Well, they gave a 4-day delivery window, after all. I just need to find more patience, is all. Will someone please send me a whole lot of patience - - - and hurry!

It’s great to be able to text Linda in Ireland. We had a half hour chat while she rode the train from Belfast back to Dublin yesterday. As it stands now, she is supposed to receive her test results tomorrow (Monday) so we’ll know the good or not so good news.  If she comes back this week, or not. She truly believes it’s really nothing, but it’s the not-knowing that’s driving everyone crazy.

Just a reminder; I cannot navigate the strairs unless someone is physically present in case I lose my center of balance. That’s why I must be a shut-in most of the time.  As I’m learning, not necessarily a bad thing. This also means that I cannot yet drive myself anywhere, either. The center of balance and motion thing again, I guess. I will know more when I talk with the doctor this week. 

Nicole was supposed to pick me up on the way to Dos Locos this afternoon where I hoped to spend an hour or two, but as I got out of the shower I felt a wave of achy pain and some dizziness, and made it to the bed without taking a fall. So I sent a text telling her I’m OK and we’ll do it another time. 

Got hungry a little while ago so I made it to the kitchen for a bit of cheese and crackers and a fruit cup. I’m feeling better…but it’s back to bed now.

And so it goes.

*

Best Laid Plans & Encouraging Results

Neutrophil. My Friend.

Thanks to that tried and true old saying “the best laid plans of mice and men often go awry” and the ability of the Center Staff to seemingly work major miracles, everything was compacted and accomplished in this single day. When the reality hit that I had no transportation to doctor’s appointments tomorrow afternoon, mountains were moved.

Fortunately for me, a new patient was kind enough to switch days and times so all my Lab Work and other appointments could happen this morning within a few hours of each other rather than spread out through tomorrow.  

Nicole was a gem; just sat with homework spread out and did what needed to be ready for class tomorrow. Between Labs and waiting for results we sat and chatted in the lounge. When the results were announced I was whisked off to the doctor’s office for a check of vitals, review of the results, and a consult pertaining to care over the next 4 weeks. 

Turns out there is no bad news to report. My blood count is still on the rise - hemoglobin, platelets are up, even neutrophil count nudging at the normal range. The only negative is the white cell count which remains low, causing the weakness, quick fatigue and shortness of breath.  Which is something I don’t understand since Neutrophils are about 50% white cells. Still, I’ll take the rest and hope the white cells will eventually come along for the ride.

I am elated that I need not be infused this week. No blood product necessary. Maybe someday I’ll be able to go two or three weeks without infusions so I can take a mini-vacation away from everything here. Hey! It's something to look forward to...

Four drugs were discontinued, replaced by 4 others so a stop at the pharmacy to drop off the new scripts was on the gay agenda. I was tiring out and we were both getting hungry so a hardy breakfast was the next and last stop before heading back to town to deliver me to my second story prison. 

Nicki will pick up the new drugs tomorrow and drop them off on her way to work at Dos Locos in the afternoon.  Still the number of scripts on my list is smaller than it’s ever been.  That alone gives me hope. 

I am shocked and amazed by even this small change for the better. I am not going to get too excited yet. I don’t want to be shot down mid-flight again anytime soon. Slow and steady and the blessing of having the supportive folks around me to allow that to happen.

It’s been a long and exciting day and I am just about to pack it in, take my evening meds, slide under the covers and read until I fall asleep. Tomorrow is another shut in day and I'll not mind a bit.

I am amazed.

*

A Backward Glance...

Last week at this time I was setting foot in the apartment for the first time in 5

weeks. It was a bizarre experience, I must say.

Looking back, I don’t think I’ve made the progress I hoped to make, but in some areas greater strides than I thought possible. I still tire easily, only have a slight increase in appetite, find it hard to stand and cook a full meal, still deal with occasional severe pain in legs and back, and tend to sleep sounder - and longer - than I did while in hospital.

On the other hand I’ve been out and about more. Walking without assistance, tending to my personal needs, eating better - if not more, and most of all - listening to my body instead of plowing ahead and over-exerting myself.Yes, I have learned something from this medical crisis.

I check the apartment/studio ads almost daily, but nothing has come up in my price range or in the selected area I could live. That’s depressing at times. But, it is what it is.

Spent a few hours at Dos Locos today, as well. The staff was disappointed that I couldn’t make a show of it on Friday so they contrived a sneaky-pete way to get me there early. Without going into details, at Linda’s request I put on a dress tartan kilt, sporran, the works, was picked up and spent 2 hours chatting with old customers and staff. The kilt certainly brought a smile to a lot of faces. Linda’s included.

Lots of picture taking and FB posts, folks kept trying to buy me drinks (no way!) - what I really wanted was a Rusty Nail, but seems a Mexican Restaurant doesn’t stock Drambuie.  Linda delivered me home (with my Crab Quesadila in tow) as she left for the airport for the flight to Ireland. 

It was great fun and lifted my spirits as so many people stopped by to give hugs and kisses and well wishes. It was also the third day of the first 7 being out and about with positive results.  Of course, I was tired and ready for a nap when I got home, but that is to be expected only one week on…

I hope to be around come St. Patrick’s weekend. I have plans to order a Wallace red tartan kilt, with all the trimmings in Miss Linda’s honour.  Wallace being her clan tartan, anyway. I won’t be ordering it too soon. I’ve lost way too much weight and I don’t think I could get it in this size right now without special order.  I’ll wait til the new year and see how much meat I put on these old bones, then surprise her at the annual celebration at the restaurant followed by an Irish Whiskey at Stoney Lonen (Rehoboth’s traditional Irish pub) after work.

I’ve run out of reading material and just happened to find that more books in the PERN series have been  published as e-books since Anne McCaffrey’s death. Seems she welcomed her son into her PERN sandbox before she passed away, and he took up the challenge of writing in it on her behalf. Anyway, I’ve downloaded 3 that should keep my waking hours busy for a week or so. 

I’m ready for bed now and whatever awaits me on Sunday - being a shut-in all day should be an interesting experience.

Still, I am amazed.

*

Day Six: Homefront

Rain, Strain, and Transfusion…Mostly

Rain and mild temperatures for a November day made me tired and lethargic.

Perhaps due to the rain and high humidity the pain in the ankles, legs, and hips got my attention. Hated to do it, going outdoors, being infused and all that, but relief was definitely required.

Linda dropped me off at the Center and ran a few errands; The transfusion went smoothly and quickly. 2 hours later after picking up the prescriptions she delivered me home and I didn’t know what to do with myself.

Five minutes later there was a to-do list that kept me occupied for the rest of the afternoon. Yes, instead of lying around doing my best imitation of a slug, I chose to be at least a little productive. The hours flew by and that was a good thing.

Spending as much time in bed (reading or sleeping) as I do, it was suggested that I find a “V shaped bed pillow” to keep me propped up without getting a stiff neck or causing more damage to my spine. 

Didn’t find any listings here in the states - the “wedge” seems to be the hot item here - but they’re popular in the UK, so I went hunting there. There were listings-o-plenty from Marks & Spencer and Dunelm Mills, to small stores specializing only in sleep and rest aids. M & S and Dunelm were out of stock (I said they were popular!) and I was getting disappointed until I came across a Google listing for Slumberdown at Amazon.uk.

Surprisingly good prices, too. Checked availability and shipping status - in stock, delivery in about 10 days - then placed the order.   This completed the items on the to-do list, I was feeling smug and hungry.

There is a tentative plan to get me to Dos Locos tomorrow afternoon for a late lunch/early supper. The idea is for someone to pick me up here around 2:30, enjoy a nice meal with the gang, then Jeffrey will deliver me home when he gets off at 4:30 - hopefully after we share an after-shift cocktail together, that is.

Sounds like a plan to me and something to look forward to just before the holiday weekend when I’ll  again revert to shut-in for 3 days. After the progress made this week, I won’t mind it one bit.

I am amazed.

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Dark & Stormy Halloween and Visit to Hell

Sassy commented; “when you’re going through hell, keep on going.” Well, in the past I’ve been told that I do that, but also have a tendency to stop and take a long look around before moving on.  I suppose it’s like there are times I truly ‘want’ to remember and consider, so as not to miss anything.  Sick, no?

Lungs are clear - no more pneumonia. Blood count is up (without outside intervention) - I am no longer in isolation. Though the port is still accessed, I am no longer receiving any IV fluids - I can walk freely without dragging around that cumbersome “tree of life” with me.  No more oxygen necessary - lungs are at almost full strength and capacity.

The vicious red, fungal rash on my legs and feet is finally disappearing.  Having been properly diagnosed a week ago, the correct meds applied, the skin is just about back to it’s original color and the itching is all but gone.  Now I hope I can wear long trousers, since it is Autumn here, after all. The rash doesn’t take to being rubbed against heavy fabrics and is barely content with a light sheet covering them at night.  

Waiting for PT to sign off on my ability to climb stairs without adverse reaction. Considering the restrictions set in play in my last post.  Still, something is better than nothing - most of the time.

Rumor has it that I might get sprung either today or tomorrow if the stars and planets align properly and that I may just be able to return to my old apartment while I search for a place on the ground floor. To transmigrate at a future date…

We shall see. 

I had a delightful student nurse with me all day making sure I did all I was supposed to do as well as keeping me company. Abby did a wonderful job and will be with me again today for 4 or 5 hours. I look forward to the diversion since she’s a delightful walking companion as well. 

The locos guys are in Mexico today, Linda is working a double which means I won’t see much of her today or tomorrow. In honor of Halloween I did ask her to bring in a few boxes of decorated cupcakes for the nurse staff this morning. My fear is the staff will arrive in morbid costumes and we won't be able to tell them from the real patients.  Should be an interesting day.

Linda has promised me a 'Dark & Stormy’ when I finally get out of here.  So, the sooner, the better!

I've got to run over and see if the lovely and talented Dr.Spo has done my reading as promised.  Then I'm ready for breakfast and the rest of the fabulous day in Spa Beebe in beautiful downtown Lewes, Delaware. Don't hate.  It's how I roll.

And so it goes.

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Life and Death are Simply Wearing Me Out!

Things on the apartment search are moving quickly, too quickly to keep up with. Two of the

apartments found on Craigslist have already been taken, am waiting to hear about 2 others. Learned that moving in with someone with pets would be borderline acceptable.  No cats, birds, ferrets, etc.  Only dogs that are primarily indoor pets, are clean, will stay off my bed, etc., will be considered

Another evaluation by the PT folks today, one more tomorrow, and now they’re talking about allowing me to return to my 2nd. floor apartment temporarily as I continue to search for one on the ground level.

The catch is that I’d be allowed up and down the stairs once daily and my occupational therapy would be limited.  Though in what ways I do not know.

My case manager is doing her damnedest to keep me in the medicaid link so that I am eligible for additional long term home health aid. She spent half her day on the phone on my behalf today.  Every time I see her my personal file, usually tucked under her arm, gets thicker and thicker. 

Medicaid sent a 1/4 inch thick survey/questionnaire to Linda that she was supposed to complete and return before this weekend. Problem is that she has no access to most of the requested documents while most of other info seems to have nothing to do with her role as my POA.  Gave it all to the Case Manager, Suzanne today. She didn’t bat an eyelash. I would have been bonkers in that situation. 

If I am released from here soon, the first thing on my gay agenda is updating, sorting, and reformatting all the medical documents, then put them all in one easy-to-reach place for quick access. 

The second thing is to prepare the paperwork to make Linda the Executor of my estate. I thought that was one of the documents we took care of 3 weeks ago, but that wasn’t the case. POA ends when my life does.  Clearly, that’s not good enough.

Gather more data about assisted living opportunities and their costs.  Seems this is one of those loose ended gambits that varies from state to state, usually with the person needing assisted living getting virtually fucked (and not in a nice way) due to loopholes and financial shell games.

A new Cell Phone Carrier.  If this current experience has shown me anything it’s that good cell coverage is important in critical situations like this. I need a more reliable carrier and I find that Verizon is the best around.   Though their level of suckitude is beyond measure, they do have to most reliable network around here. Granted, I’ll be paying over half again what I’m paying now, but what I am paying didn’t produce a signal or wifi for texting. Time to bite the bullet.

Probably the most pressing issue about being back in my own space is the inability to clean, do laundry, mop, dust, scrub, change sheets, etc., on my own. I know it will be almost impossible now, but Linda has told me not to worry. If the Home Health person doesn’t do it, she will see that it gets done, somehow.

Having been laid up for a month I have no idea what I can and cannot do for myself anymore or how much stamina I will have when sprung initially.  Still, Linda says I am not to worry.  So I won’t worry. Well, maybe just a little.

There were two huge dark chocolate bars waiting for me when I woke up this morning. No note or card. Just one 60% cacao and the other 85% - 100 grams each.The have to be from one of the nurses, but from the night crew from last evening or someone from the day crew today. And, no one will tell me.

I’ll find out sooner or later - or not. Meanwhile I will enjoy the chocolate and thank the Universe that such a kind person thought of me.

And so it goes.

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Vandals, Vitals, and The Boogie Man

Vandals set off the fire alarm on the floor making the scene look like something from a Three Stooges movie.

An elderly patient died a little while ago, sending the already over-wrought nursing staff caring for her into a tailspin. My room could have used a couple of bottles of wine to help deal with the pain. I don’t know the person, those who did loved her to death.  Literally.

Ron (Retired in Delaware) paid a visit having read yesterday’s post he thought it was safe and I’d not be groggy or asleep. He was right. That didn’t happen until later in the afternoon.  My own fault. I tried to do too much in one day.  Pain meds helped take the edge off in the afternoon and evening.

Linda brought Chinese food for lunch as we scanned the papers for year-round apartment rental ads.  Making phone calls between bites quickly became tedious, so we settled on eating first before returning to the search.

Apartment hunting eventually took me to Craigslist where I found 3 possibilities. Having never been to the list, it took a while to navigate the site and learn the shortcuts.  Still not sure I know many of them, it is a strange place, indeed.

Three days to go on antibiotics, the pneumonia should be pretty much gone and I ought to be free to go - if my blood numbers keep up to speed.  Trouble is, no where to go - yet. Back on oxygen to further clear up the crackles in the lungs and am now using a new device that looks like something between a bong and a killing tool from Star Wars. It is supposed to strengthen the lung capacity.

Took another walk this morning and the thing must be working because I wasn’t short of breath or dizzy when I returned to the room. Oxygen level remained at 96%, so I guess I’m doing something right. 

All things considered, it’s a pleasure being in a place where every waking moment isn’t devoted to hyperventilating about the Ebola scare. From what I’ve read, not much I’l grant you, this is being hyped just like the H2N1 virus was a few years ago. No one seems to be as terrified as the media would like us to believe.

One can read 3 different news sites and come away with three different story lines.Nothing seems to be focused or presented without some mild hysteria.  Yeez! 

Reality, people.  Reality.

And so it goes.

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Got to Admit It’s Getting Better…

...A little better, all the time.

I wake up every morning with a song in my head, I woke up singing this song this morning, so let’s hope it’s a good sign.

Second day without a fever, little appetite, and no news on the new digs front. I’ve been sleeping a little better, more relaxed; although I sometimes feel that I am sleeping away what last hours I may have in this life.  Still it’s good.

Two friends from my previous life visited and were subjected to the doctor’s tirade about my “living on borrowed time” but if it bothered them, it didn’t show. Personally I was relieved that he finally went public here in my room with strangers in attendance so that I could have a chat with the attending nursing staff. 

End of life issues will be openly discussed in this room from now on.  No more “we don’t talk of those things here.” I won’t have it. I’ll do my best to get well enough to get out and on my own, but without denying what lies ahead.  They will adjust or move on. My sensahumah remains intact, so don’t fuck with my life.

My friends had just left the Memorial Service for an old friend who passed away a few weeks ago. He was Ron’s (Retired in Delaware) lifelong buddy Big-Bob and he had many friends here. Of course, I was stuck here and in this frantic environment had forgotten the date. Before sleep took me, I brought back memories of some of the good times we had together, then said my good-bye, as well.

Received a phone call from regular reader, Calvin, the other evening (don’t ask which one).  It was a joy to chat with him, to give voice to the comments and kindness he’s shown.  

Linda returned from Ireland and stopped by on her way home yesterday. As is usual for her, she brought back an Irish Medical Kit containing 3 different bottles of Jameson’s - if I’m ever in need. (grin) Of course, that could be any minute, as I am sure you’ve guessed.

My room has become a sort of safe-haven for some of the nurses during their shift. If things get too hairy at their station, they just come in here, sit down, and we make fun of the world for a few minutes. This seems to help restore their sanity allowing them to face another hour or two.

One frazzled nurse came in looking quite scared. A drunk had just been dumped on her who happened to be going through violent withdrawal, threatening to beat her up if she didn’t let him up so he could find his “vodka to get his morning off right.” When he finally lunged for her, she took off and came over here.  I asked about the police and if there was a guard to protect her from this crazy guy. 

She leaned her head back, barked out a laugh and said, “yeah, there’s a guard. This guy is 6’4’’ and the little bitch guarding him is around 2’3”. What the hell can she do? Maybe she could hold onto his ankles as he dragged her around the room!” Then we both laughed at the image of the prisoner and guard together.  Then we laughed some more.

Want to thank Ann Marie & Todd in Philly for the lovely card. It was sent to the apartment about a month ago and I just got it yesterday.  Thanks for thinking of me.

I hope I have energy enough today to read (catchup on) some fave blogs. It’s been a long time. But don’t hold me to it. It’s far too easy to simply read a book on the Nexus7 and fall asleep as needed. I wouldn’t want to fall asleep, drop the laptop and break it. 

Maybe I’ll post again after I find out the current status of the blood work and the antibiotic infusion.

And so it goes.

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The Old and News

Sitting up and at peace for the first time in a few days. From my window I can see the treetops from

the park nearby. It’s been interesting to watch the leaves change color and I am sure you’re thrilled with this information.

The news is a combination of old and new.  Extremely high fevers remain the order of the day; so destructive that when they’re over, I feel like I’ve been kicked down a flight of stairs and the rest of the day is pretty much a waste.

No visitors, but a call from Linda in Ireland every day has been quite a life-line. No news on the living space front either. Just more people looking out for me. Something has got to break on this one soon.

I met with my new Oncologist and feel very good about her. A new outlook and drug changes will begin happening on Monday. Aside from her, Dr. Scott (my future ex-husband) has jumped back into my case and all focus now seems centered on creating a better quality of life, for however long that may last. He has also chosen to continue with the pain medication (Fentanyl Patch) even upping the dosage slightly.

The pneumonia isn’t as annoying today, and so far, no fever lurking nearby. I’ve been hooked up to oxygen since last night, so I was dry and hoarse this morning, but water took care of that problem in no time. Scheduled for another 6-pak of platelets today, so I guess I'll be doing a lot more reading.

BTW, Some folks have said that their comments are not getting through and the only thing I can tell them is for some reason, comments that used to be directed to a special email account are now being posted by Blogger. I just found 15 comments and have posted to the blog. As with all things Blogger-related, there is no method or reason for this change, but I know now that there is one more place to hunt for comments now.

If you comments aren’t being posted it has nothing to do with my moderation. I haven’t had to delete a comment in a very long time. 

Not sure if this will make much sense, but too lazy to go over it all again. It is what it is.

Here’s to a beautiful weekend, and a bright beginning on Monday. I do need something positive in my heart today.

And so it goes.

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