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.

*

Hi! Remember me?

Why, Hello there!  Haven’t seen you in a while and it’s just as well that you haven’t seen me.

There’s no amount of Max Faxtor on the planet, trust me.

Way too much has happened in the past 3 weeks and I couldn’t remember the dates if I tried. I do know I am on another big batch of antibiotics as well as anti-fungals now.

There is a fungal infection around the heart and the pneumonia just doesn’t want to leave me.

I am now on oxygen, too. Only 2 litres, but still enough to be annoying and in the way.

A couple of the tests were invasive, so even with the MAC a few feet away, there was no energy to write anything coherent and informative

That’s all I’ve got for a medical update for now.

Although I’ve not been online for the holidays, I’ve thought about many of you, very often. To those who’ve stayed in touch even dropping a note occasionally - a special thanks. Your words and thoughts kept me going when the pain (or painkillers) almost let me down.

Don’t know what’s in the future but without a living space on the ground floor, I won’t have one any time soon.

I don’t have an iPad here, but you folk with FaceTime might me hearing from me via my iPhone. I hope you don’t mind.

I’m stationed in room #224A (don’t know how long) at Beebe Medical Center In Lewes, DE.

I’m drugged a lot so I sleep a lot.  Sorry about that, it’s what keeps me from sitting at the keyboard and writing. 

Suffice to say, I miss you all and think of you often. If, for some reason I can’t get back online again for a while, I want to wish you all a Happy New Year.

Didn’t think I’d get this far!!!

I am amazed.

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.

*

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.

*

It Happened So Fast

Oh, What a Night! So much can happen in so little time.

Rain
Rehoboth Beach Christmas Parade
Crab Quesadilla to Go
 Wet Driveway
Call 911 - Cannot use left arm.
X-rays - Left Shoulder Dislocated
Orthopedist Called 1 a. m.
IV pain medication
X-rays - Chip & Fractured Shoulder
Three Attempts at Reset
Sling & Home

Lots to write about when the left arm/hand is functional again.

I am amazed.

*

A Magical Monday

No one was prepared for the shock of 75’F and clear skies that blessed us here at the shore on first of December. I thought about sitting on the top step of the landing to soak in the warmth and fresh air coming in off the Atlantic, prepared to spend most of the day in bed reading, as usual.

All that changed with a text message from Linda asking if I’d like to join her for an ice cream cone and walk on the boardwalk in the afternoon. Of course, I jumped at the chance. It might be just the thing to help the swelling in the feet and legs.

When she finished her catch-up work at the restaurant, she picked me up and off we went. First we took a drive to the liquor store so she could replenish her supply of beers and wines depleted during her time in Ireland. She found a new Icelandic brew that had been raved about, so she bought a 6-pack of each of the three different flavors offered by the company, which is new to the US. 

We drove back into town and found a parking spot close to the boardwalk. The jacket I brought JIC it was cooler near the ocean remained in the car. It was a magnificent afternoon and we ran into people we knew from around town and the restaurant who had the same idea. Many were surprised to see me, others surprised to see us together.

Preparations were underway for the annual AIDS Day candlelight march and service of remembrance to be held in the evening.  I was more grateful for the nice weather because for the past 3 years, the weather has been cold and rainy, or cold and windy, making for an uncomfortable experience and a lower turnout than usual.

Initially, the walk was painful aggravating due to swelling in the feet as well as ankles and calves, but that soon faded, became easier and my gait more steady. However, having walked about 5 blocks on the boards, Linda thought it wise that we share a bench, rest, watch and listen to the ocean. It was a little piece of heaven. I soon realized that this walk was Linda's plan to get me to exercise more as well as get out of the house.  Her plan worked on both fronts. Bless her.

I determined I’d walked far enough for one outing, so we returned to the car and drove back to the restaurant. The shifts were just changing, it was about 4:30 by then, so I joined the crew in a Golden Margarita, sat and enjoyed being out for the second day in a row.  Especially in such weather, which was quite a gift for December 1, in any case.

I was getting tired and hungry, so Nicole made up a Bison burger with sautéed onion rings to go, for me. Jeffrey saw me home and it felt odd not to experience leg pain for the first time in months - even walking up the stairs.

The bison burger was delicious. I washed it down with an English Ginger Beer Linda brought back from Ireland. All was right with the world. 

Interesting to note that I woke this morning a little sore in the ankles, but less swelling.  We’ll see how long that lasts. Jeffrey is picking me up shortly to run a few errands that were put off from last week, so we’re likely to stop off for breakfast, or lunch - depending on how long our journey takes.  Either way, it will be fun, and a third day out of the apartment, little worse for wear.

I am amazed.

*

Full Of … Surprises

It’s cold, raining, raw, getting colder - chance of snow/sleet/freezing rain tonight into tomorrow and I am one exhausted Big Cat!

Surprises:

1. Heavy rains began overnight waking me shortly after midnight.  I’ve been awake ever since. The high winds and rain have continued all day.

2. There’s a new Hematologist on my case at the center as of today. He seems more familiar with it than even the oncologists on staff.

3. Labs showed the hemoglobin numbers to be in the basement again so two units of blood were ordered - for today.  

4. With the holiday tomorrow infusion had to be done right away. Couldn’t wait, but I had to. It can take hours to type and cross match for my infusions and today was no exception.

5. Eight hours in the infusion chair alternately waiting for the blood product to arrive or being infused.

6. Arrived home to find a message from the new Hematologist asking that I call Friday to schedule an consult with him.  Seems he has an idea for a new form of treatment. Oh yes, something new. If I have the transportation, that is.

So there you have it. I had a grand list of errands to run today - thinking that the Lab results would be just fine and no transfusions necessary.  I felt fine and looked good, too.  That’s what everyone said.

So, no dry cleaners, grocery shopping, credit union (for quick cash), no quiet lunch at a nice little restaurant, and no new flannel shirts. We did manage to get to the pharmacy to pick up the waiting scripts, but that was it for the entire day.

Now I am exhausted, sore, with swollen, painful legs and nothing in my stomach all day but a bag of gold fish, a bagel, lots of ice water, and 2 cups of coffee. Jeffrey made a stop to pick up some prepared fried chicken for my supper.  Turns out the chicken is inedible. Dry and tasteless.  A cold turkey sandwich is on the menu tonight - if I have the energy to make it.

I don’t know what is the more uncomfortable; the suppressed anger, the sore butt and fatigue from the infusion chair, the wasted day, or the fact that it will be next week before I get out to try again.

With the winter weather slowly creeping into the area, those outings will be much reduced or non-existent in the weeks leading up to the end of year holidays. And once again I’ll be a prisoner in my own apartment.

The one bit of really good news came from Linda today. She got the all clear from the Irish doctors and she’s coming home tomorrow.  We are all very relieved by this news. It certainly ends the day on a high note.

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.

*

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.

*

No Boring Shut-in Here

Flowers from Dos Locos at Hospital.

Up early again and made coffee - French Press - to warm myself up and begin the day on an up note. Actually made two big mugs to begin the day. Listened to the Pet Shop Boys video (posted earlier) to keep my mood elevated and plunged into the day. 

Ordered 2 prescription refills which will be picked up tomorrow when Nicole takes me for Lab work at the Cancer Center in the morning. She has the day off; with Linda still in Ireland she offered to fill in for the task.  Nice of her. I hated to impose because she’s going to school, and works at 2 restaurants to make ends meet.  Very little free time for herself.  I am humbled by her generosity. 

Spent some time clearing and reorganizing the closet. It was like a black bag Liquidation Sale! Turns out I was very much a Carisack collector (Havisack, too) - had them in all shapes and sizes and from every possible manufacturer. As my needs and gizmos changed, so did the size and shape of the Carisack. 

Ordered another new cap from Amazon. A gray version of the black Irish cabbie cap I’ve had for a while. I like the texture and lightness as well as how it looks with any kind of outfit - dressed up or dressed down. 

Made an appointment to meet with the local funeral director to choose the kind of service, if any, I want for my funeral. Since I am going to be cremated anyway, I don’t think I need anything fancy in which to be laid out.  If anything at all.  I know nothing about this stuff, so will fill in the details when I learn more.  I don’t even think there’s any reason for a viewing. 

Since I am not allowed fresh lettuce or tomatoes, a proper “dressed” Roast Beef Po-Boy is out of the question.  Still I can make the gravy, toast the baguette and slather it with mayo and pickles - at least making it into a modified Po-Boy, or French Dip.  That will be for supper tonight.  Chips would be nice, but I have none. Bother.

I decided to kick the Gillette and Schick shaving systems. When I found that 8 replacement blades were priced at $25.00 I vowed to find another way.  Since I shave my head as well, I wanted something with multiple blades at a reasonable cost.  And I found HARRY’S!  Great prices, good reviews, and free shipping. I ordered a starter kit which ought to be here in a week. Cost of replacement blades is half that of the other name brands. Abount $1.80 per blade.

Since I am no longer allowed to have house plants because of the mold spores causing infections, Jeffrey will be taking them home to care for them in his new place, which has a bright enclosed porch. I would have hated to throw them away, since I raised them from 6” $5.00 pots over the past 5 years and they’ve gotten very large and happy here. I hope they grow well for him, too.

Well, well, well.  Isn’t that precious?  I just received an email containing a somewhat long patient satisfaction survey from the Beebe Medical Center.  I think afternoon and part of the evening will be well spent, after all.

I am amazed.
*

Not Worthy, and Other Bull$hit

Received a phone call this morning from a whining, nasally voiced, arrogant bitch with an attitude for days.  Seems it has come to her attention that I have not yet moved into ground floor quarters therefore she is punishing me by withholding Occupational Therapy at Home. 

Oh sweet Christ on a cracker!  I am unworthy of her care and attention!!! How do I put this gently? The harpy is clearly off her feed or meds, not sure which.  Bless her heart!

She sounded more like Miss Francis from Ding Dong School (I’ll wager no one will remember who that is.) on Speed than a medical professional, but I let her rant and purge, stomp her feet and reprimand for a good 5 minutes.  Finally referred her to the Oncologist and Infectious Disease specialist. Enuf.  STFU, lady!

Sure it may take longer these days, I do believe I can change my clothes, wash dishes, bathe the scrawny old body, tie my shoe laces, and even prepare my own meals if needed.  So I told her to go and blow goats, in the most Christian way, of course.

Linda picked me up for the Center appointment; ; the Lab results showed that I require a single unit of whole blood. This has been scheduled for tomorrow morning at 8:30 - Linda will also drop me off and pick me up again tomorrow. 

While we were out, we stopped by her house and she weighed me down with more of her Stew, which is a heavenly treat. (No one can say she's not doing her part to fatten me up.)We also stopped so she could do a bit of banking, then dropped off yet another prescription (I still had a small supply left here, so I didn’t rush to fill all the scripts last weekend) and was told that the other pain patch ordered had not yet arrived today as promised.  So, both will be picked up tomorrow after infusion.

By this time we were both hungry, chose to dine out for breakfast/lunch, and sort through some of the Medicare papers she’s received already this week.  If only they were as quick to settle claims as they are to send bills and demands for completed questionnaires this would be a far, far simpler world to live in. 

Just as with the last batch of bull$hit Linda received, many questions couldn’t be answered because the documentation is only available in my own files.  Jeez!  These people are such Gits!

For the second day of a row, I’ve spent 2 - 3 hours out and about. Again, it felt deliciously good even if I do get a bit wobbly after the first hour and a half. My strength will build, albeit slowly and eventually I’ll be able to drive myself and even master more of a comfortable walking gait or stride.

For now, someone will be here to help me up and down the stairs; bring up whatever packages or bags are in tow. This is all very strange for someone who has been such an independent person for so many years. I am not used to being pampered and I guess it shows.

Sometimes I feel like a toddler and other times feel blessed that those helping hands are here for me.

I am amazed.

*

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.

*

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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Rigers, Oxygen, & Demerol

Bother!  It’s happened again.  Just when I thought I was getting a handle on the relationship between the fevers and the acute pain another new wrinkle is added to the mix.

At 1:30 this morning I was virtually flattened by a fever of 103! It came out of nowhere, sent nurses into quick action, left me sprawled, trembling with Rigers as they attempted to warm me up and make me comfortable. I also received another 6-pak of platelets. Which seemed to help, too.

No false alarm this time round (you know how tired I get just writing the same things over and over again?) only a real slam-bang slice of the nasties to ruin my night’s sleep and make the day miserable. I’m eating a little more, though not much. 

Bev-Ann, one of the best nurses at the center called this morning to say good-bye, seems she’s on her way to 3-weeks in Spain and wanted to tell me she missed me and hoped I was doing well.  Now how nice is that??

The rest of today has been more surprising than ever. As the sun tried to make an appearance through heavy cloud and rains, my energy level seemed to perk up and I was suddenly very hungry. 

After a moderate size breakfast - with 2 cups of coffee, mmd you! - I shaved and trimmed by beard (baby-fearsome is still thicker than I ever imagined. I set about doing a medi-wipes hand shower, followed by a good shampooing.  I’ve not been able to shave my head in almost a month, still can’t, but I was able to scrub it clean and feel refreshed.  More than I have in weeks.

Attacked all the paper work and updated mailings from credit cards, credit union, etc. It’s been sorted out and will go into the file cabinet when Linda returns this weekend. 

By lunch time I was hungry again, but only enough room for a soup, crackers, and some sherbet.  More than enough for me; it felt good not to waste food, too.

After lunch I knew I was done for the day and settled in to read a while.The pain was really bad, but so far, no fevers. A very good sign. Put on oxygen, grabbed an icepack for my upper back, slid under the covers and rested.

For some bizarre reason I feel a kind of calmness that some things are about to fall into place and I’ll be out of here soon.

The LocosGuys called with more cryptic questions and statements regarding my time frame for the move. They keep pointing to an apartment in a specific development, but won’t give me information, so I am not going to take in seriously as I continue to hunt for new digs. 

While I like the guys, this is no time for 20 questions, Truth or Consequences, or Jeopardy.  I need a place to live. No games! I have no time for games, and even less time for bullshit.

Now I await a happy painkiller to see e through.  

Here’s hoping for a peace filled, glorious night. The Seawitch Weekend begins tomorrow.

And so it goes.

*

Back to the E R

To all you friends and commenters, thanks from the bottom of my heart for your humor, thoughts and prayers.  It’s hard to put into words how they lift me up. 

When the pain is outrageously bad, it’s soothing to think of Sassy Bear holding my hand.  

Yesterday came and went with little change here. The joint pain made me too weak to move around without holding on to something. Fortunately, in my cigar box size apartment everything is within a few feet of everything else. Sometimes even that distance is too much.

Two painkillers made a tiny dent in the pain that shook me to the core.  Barely able to stand, I even had to pee sitting down - then it was a chore to get up again, so I gave that up.

I think I have made the connection between the joint pain and fever. When the fever was at its highest yesterday at 102.F  all movement was excruciating. 

(yes, I know, I was supposed to call 911 if the temp got that high, but I just couldn’t do it)

I took a high dose of tylenol, 2 benadryl, and 2 painkillers, then crawled into bed fighting off chills. I lay on my back very still - thinking about that kiss on the forehead offered by Fearsome -  and eventually sleep took me. I don’t remember a thing. No dreams or anything, which is very strange for me - I dream all the time.

When I woke up I was soaking wet as was everything near or on me. I noticed the pain was gone immediately. Got out of the wet things, dried off, brushed my teeth and headed to the kitchen for an Ensure.  The pain in my joints was gone.

After cleaning up I moved to the dry side of the bed and read, feeling more relaxed and relieved. The sheets will get changed soon enough, but not now. Eventually I slept, but again, no dreams. 

Another high fever has hit, so I guess I’m off to the ER anyway. I am hardly ambulatory at this point.

It is what it is and I’ll take it as it comes. 

*

Back to the ER

A Step Back, Then Forward.

Written 9/26 - posted late.

I’m back where I was earlier this week.CBC was low, platelets held their own at double what they were Monday. Another unit of blood was ordered for today. 

Keeping with the feelings of the past few days I was tired, chilled, weak and breathless when I arrived this morning Spiked a high fever of 102’ so while I waited for the cross matching they gave me 2 tylenol and covered me with warm blankets back in the Infusion Center.

The consensus is that most of the blood received earlier has been dispersed into the system in the form of the huge bruises (which have spread wildly); little getting to the heart, hence the extra unit today. When I arrived my pulse was 133 and I was panting heavily.  No, there wasn’t a good looking (read Hunky) gentleman anywhere in the vicinity. 

Felt terrible most of the morning until about half way through the new blood when my breathing calmed, chest relaxed, and chills subsided. Fever finally came down to 99.3 (my normal these days), pulse dropped to 103, and I was fairly clear-headed when I left for home.

I have a new prescription (just what I need, another one!) for a drug similar to Ativan, which I will fill tomorrow when I feel stronger.  Being a narcotic it must be hand-delivered and signed for at pick up. Too weak to stop this afternoon and do all that walking.

Haven’t been sleeping well all week, either. Maybe I will tonight with the new blood and extra Benadryl.  I can only hope. 

I hope the weekend is one of healing and restful sleep.

And so it goes.

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