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'.

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I Really Need A Plan

It has been another 3 days since I’ve heard of any brilliant plan from the Gods on High regarding any new treatment and I am alternately wide awake or very sleepy when any rumor arrives. So far, it’s all turned out to be rumor, cause here I sit.

I’m getting a lot of reading done and in my very confused little mind trying to sort out a legal itinerary for a legal trip to Holland for a soothing end to this nightmare via a short side trip to Euthanasia

Anybody up to a trip to Holland?

I keep trying to write Dutch friend, Peter, for his input, but the words don’t seem to come together on paper so I give up and try again another time. I mean everything from coordinating oxygen, wheelchair, medications, transportation to airport and to the Dutch medical facility, and then reversing the whole process - without me in the mix. 

Ashes scattered all over Amsterdam would make me very happy and content.

If you have any experience along these lines I’d appreciate any input you’d be willing to share.

Meanwhile I await the coming visit of at least one surgeon or specialists for quality care of some kind…ANY kind.

Anyway, Happy New Year, if you don’t hear from me beforehand

Amazed and still confused.

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Just a Thought: A Stagnant Truth.

How far does loyalty and American Patriotism take you when a young, supposedly heterosexual soldier is ordered to rape (FUCK) anally abuse teenage boys?  Forget whether the acts were performed in front of family members, or not. It’s the very act that matters.

Just following orders! (?) Foul, evil, conniving, self-righteous.  Humans enjoy nothing more than the act of harming other humans

Does it take this sick behavior to finally stop you in your tracks to say, “this, my entire way of life, has been a vast red-white-blue lie.”?  Does it?  Even a little bit? No wonder more and more of our soldiers and hurting. There are secrets to keep, they bought into the lie, too.

Yes, by all means, let’s offer a free ride and safe passage to George Bush and Dick Cheney, but do everything possible to draw-and-quarter the likes of Edward Snowden for drawing attention to their crimes, and others.

All humans are truly pathetic, dangerous creatures. We’d rather harm others who suffered as we have, than to banish that suffering and those who ordered it in the first place.

I am sick.

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Reprimands, Appointments, Arrogance

I’ve been reprimanded for using the word “burden” in the last post. I am sorry. This is so very hard for me and sometimes I fall back into the old thinking. Were I a caregiver I know how I would feel hearing that word, but it’s very difficult to project it onto others. I will make every attempt never to use it again. 

The appointment with the Orthopedist went well. Given that we were both awake and I was only slightly sedated we were able to rehash the events of Tuesday night. He’s really a nice (read handsome) man and over the past week had educated himself to my case.  He asked a few questions that had puzzled him, but all went well otherwise.

He set up an appointment for a CTScan for this Wednesday - conveniently after the Labs and the other Dr.s appointment at the Center. Even set it up at the Imaging Center next to the Cancer Center.  Couldn’t do better than that.

I’ve an appointment next Monday to meet with the other surgeon who will aid in the cutting up of my shoulder, removing the broken bits, and repairing any damage.  You know, a few years ago I would have cringed at talk like this, probably gotten physically ill, but now it’s like I’m just another piece of meat.  And believe me, that’s what I feel like.

The sling is to remain in place and the only exercises are to strengthen the hands, fingers, wrists. That’s OK with me, because gravity begins to set in after the sling has been off for a while and it feels like the shoulder is being drawn towards the floor. I purchased a rubber ball for the purpose of exercising and use it absently while reading. 

Finally made an appointment with the attorney to update the Will, etc. only to have her call last evening to cancel that one and try to finagle another one.  She got all huffy when I told her the suggested dates wouldn’t work for me (she actually sucked her teeth, you know, that “tch, tch” sound a few times) so I explained the situation - just like Vivian Leigh I am dependent on the kindness of strangers for things such as transportation these days.  

When I finally said I couldn’t understand the problem, that her office hours are supposed to be 8 am to 4 pm Monday through Friday, she really got pissed, almost to the point of raising her voice. So I gave her specific days and times that are usually convenient, told her to work around that, then call back so as to confirm something with my friends and driver. She was not amused.

As Archy would say: “People may think they amount to a great deal boss, but to a mosquito they’re just something to eat.”

I was exhausted and went to bed soon after. She is another one who used to be a friend in my previous life. So, there’s that.

I am amazed.

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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.

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Apartment Search Continues

I came upon a listing for a rental nearby on the ground level with off-street parking.  As I’ve mentioned before, it’s slim pickings out there. Only a few things wrong with it. Rent is more than I can afford, even if only $25. more. It is a 2-bedroom mobile home, I only need one bedroom. That’s quite a large space to heat with the winter ahead and I don’t know how well insulated the place is. With the compromised immune system, sensitivity to heat and cold is more pronounced. 

The other monthly expenses include water, sewer, and trash pickup. I already pay for electricity so that’s not an extra burden in itself, unless the heating system in the place is also electric. Then it could be a killer.  I know.  From the published image above the place looks clean and neat, well kept.  Yes, but at what expense?

The other issues include snow and ice removal - can’t do that myself - and the Verizon telephone and DSL wiring infrastructure is very old, so I may not have high speed access to the Net. This was a problem when I lived in that area about 6 years ago.  When it rained, snowed, or flooded the phone lines went down - sometimes for days until things dried out and techs could work on restoring service.

At any rate, I’ve called and left a message requesting the approximate cost of each of the added expenses above. I have little hope that everything will be within my budget. Even less hope that I’ll find something affordable and livable any time soon. My hope is to continue to gain strength and weight, get through the dizziness balance issues, navigate the stairs more than once rail, and drive my own car again. 

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.

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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

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The Scots, Shorter Turkey Day, & Shopping UK

Finished the ebook “How the Scots Invented the Modern World” and highly recommend it for history buffs and Anglophiles for a quick and easy, insightful read. I am sure Ur-Spo would enjoy it. And maybe even Ron at (Retired in Delaware) since he's into genealogy and family histories. In fact, anyone who enjoys the historic connections between the Britons and the Americans will learn a great deal that we didn’t read about in our history books. 

The Scottish Enlightenment, the brutal, horrific Highland Clearances, the great thinkers and doers, the proud and wide-spread Philosophy of Scottish Educational System. Absolutely fascinating. It was probably a quick read because so many real life characters were written in a way that made their historic deeds and past lives before - and during - the diaspora that much more interesting. I  hope that makes sense.

I am now on to LOTR which ought to take me well into December and away from anything and everything unpleasant. Since these are real wood-pulp books, they’ll be more of a chore to lug to and from medical appointments, but we’ll get it done.

Special Alert: Today I am in a quandary and I need help.  No matter how much I clear out the one, single closet in this apartment, there is always more to find. I came upon two more large tubs today containing items that must be identified, sorted, cleaned (if usable) thrown away (if not) and that may just be the one thing a shopper at the Thrift store is looking for. I don’t know where it is all coming from and half is unrecognizable. Now Back to Regular Blogging.

I am not looking forward to Thanksgiving. Never really liked the holiday as a kid - too much family mishugass ending in arguments and creating bad feelings

too close to the real holidays.  We weren’t a sports kind of family, so verbally beating up on relatives was the order of the day. As a kid I remember that after helping clean up the kitchen my refuge was the  bedroom where I would listen to music or read for the duration. I was never missed.

Only as a gay adult in a “stable” relationship did I begin relating to the holiday. My house became the go-to place for wayward gays and lesbians with no other place to go. From NYC and NJ, to the Delaware shore. Over the years it became a tradition.  The first year there were 5 waifs; over the years the numbers fluctuated from 5 to 11 and it was all good fun. I usually did the cooking - others brought side dishes or desserts - and everyone else cleaned up.  We'd listen to music, dance and/or watch movies on the teevee machine. Spanning the eras from Vinyl to CD; VHS to DVDs.  Very relaxing times. That life, all those people are long gone. It’s a day like any other, albeit a quieter one and I don’t miss the work and fuss one tiny bit. 

It has been over a month since I ordered the “V” shape pillow from the company in the UK.  It has now been 26 days since I received word that the package had been ‘dispatched’ but to this date, the package has not yet arrived. 

The reply to my request of “Hey! What Gives” returned a familiar excuse to us Americans - “it’s the busiest time of year for the Royal Mail as it is absolutely swamped, so please be patient and give it another 3 to 5 days.”  Well, what else can I do?  They have my money and the damned thing is somewhere between the UK and the US, probably in a small steam powered boat chugging it's way across the Atlantic.  Hhrumph!

I think I’ll partake of one of those Scottish imports that must get old to be respectfully enjoyed.  A bit of single malt Scotch Whisky.  But, that’s for much later…

I am amazed.

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New Blood, Jettison of Shorts & Touchdown of Kilts.

One Style of Modern Utility Kilt

Unfortunately, Labs results yesterday told me I needed to be infused. The hemoglobin was down a full point - below the cut off point for my own safety. 

One unit was ordered and the port remained accessed for convenience. An appointment for blood was quickly set up for this morning at 9 am.

Nicole offered to do the honors, even if it is her day off. In return I promised a bit of winter shopping and a stop for lunch at the restaurant of her choice. She giggle and said she’d like nothing more than a burger on the beach if the weather was warmer and the winds weren’t so strong. We settled for something a little less uncomfortable - and indoors.

While I was somewhat disappointed in the outcome of the tests, the up side is that I went 2 weeks without requiring new blood. That and the fact that the platelets remain in high numbers as do the neutrophil count give me hope.   Slowly, but surely…

Patience, please! 

The infusion went well, though a little slower than usual, but I was still ready for lunch about 1 pm. And I was HUNGRY!!!  Enuf said.  

The afternoon flew by after lunch as Nicole and I traipsed around the area scouting out shopping venues for special items she wants to get her grandparents and friends. We had a good time and when we were finally done, I was pretty beat and ready for the drive home - and bed. 

I will be in bed in a few minutes and I’m sure she’ll be the same when she gets home shortly. She’s off the rest of the day, no new homework to contend with until Monday.  Her last class is tomorrow morning so I can assume she is in “chill” mode for the weekend.

Casual Tartans with sporrans.

Following 2 days of outings this week I am ready for shut-in mode, if for no other reason than to address the edema in the ankles and calves.  They are quite large after being on my feet for so long. The Kilt with soft loose cotton socks helps alleviate the itching and redness. I even bought a pair of those Eddie Bauer men’s thin lounging light-weight flannel pants, but they’re still too annoying on the front of the shins and calves.  

So, shorts or kilts are the items to remember for daily dress.  I’ve been receiving many compliments on the kilts this past week or two. So, I have a new attitude towards kilts vs. shorts.  Shorts big and baggie and not comfortable even after their washing and drying yesterday. But none of that is true with a kilt,  so as not to cause additional injury or more pain the kilt wins hands (pants!) down.

I’m totally hooked on kilts now. And…I don’t look half bad wearing one,

Similar Style to my old black one. I love it.

either. I am partial to the utility kilts due to their rugged design, heavy duty fabric, double stitching, and the over all comfortable feel. The "drop" is usually between 22" and 24" and depends on how you wear it at the waist. I'm pretty comfortable with either length, but am more used to the older 24" drop.

So, there you have it.

If you’d like more information on a small reputable company with great prices and the best shipping and customer service, just send me an email message and I’ll get the info off to you.  Or, if you’d like, I can post the info here and you can take it from there on your own. 

I am amazed.

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Wildlife in the Snow. Rare!

And very very stoopid!

A Bear in Buffalo, New York caught doing what the non-hibernating side of the species do during a snowstorm that will eventually  dump 9 inches of lake-effect snow on the area.

***Courtesy of the Daily Mail, UK. Seems readers of the paper would love nothing more than for this nightmare to fall upon them.  Careful what you wish for.

You can’t make this up.

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Uncooperative Blogger

It’s seems as though Blogger has been hitting my drug stash lately.  My posts are not being published when I send them, but languishing somewhere in the  digital ether for Blogger’s own convenience. I didn't post on Sunday.

For a while now the comments of certain bloggers have not been deposited in my email box, but stored directly in the Blogger Folder, making it a chore to discover, moderate, and post all relevant comments from all readers. 

Sorry for any chronological confusion this may have caused. I may try “timing” or scheduling posts for a while. Also, if this craziness continues I may turn off moderation and let the chips fall where they may. 

The few SPAM messages that get through are hardly worth the effort. Most of the stoopid comments are posted  anonymously and refer to the BP oil spill, the Katrina Aftermath (which I wouldn’t let go of) or aimed at my political views.  I wanted to spare readers the poorly written comments from the “friends of Jesus”, but I don’t think it’s worth it anymore.

There’s gonna be some changes made!  Just to reiterate; I didn’t post anything on Sunday…so confusing.

Anyway.  Today is Monday and I am feeling a little better than yesterday. A shut-in all day, I received texts from the UK and Ireland checking in and checking up on me.

It was also a day for receiving personal notes and letters from concerned readers and friends.  Most thoughtful and thought-provoking, indeed. It was somewhat surprising to learn that those folks cared about me. 

So, I spent the day doing research and hunting down info that a layman could understand on certain topics that have always held an interest for me.  Then when my head was about to explode I would lie down and read something for fun, have a bite to eat, or nap. (I enjoyed the remaining half of the crab quesadilla leftover from Saturday evening) 

The good Dr. Spo came through with my Halloween reading, which was quite positive considering, more than I expected and most welcome.  By sheer coincidence, one of the cards in his reading turned out to be the card of the day for today. 

All in all, Sunday was a good day to be a shut-in.

I feel more energetic today, but then I’m not doing much of anything either. Very little pain to speak of so far, balance seems better, so I’m just following the routine. Maybe tomorrow I’ll get someone to take me out for a short time - maybe a short walk on the boardwalk, or just around the block here - start small.

I am amazed.

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Queen of Swords

Drew this as the card of the day and while I’ve drawn her many times over the years, her true meaning just slapped me in the head. I’ve just come to recognize my own Queen of Swords.  It’s Linda! She is everything described and no matter where she appears in a reading she is always true to her nature.

Interesting this, because I just learned that Linda must return to Ireland this weekend.  This time for a health check of her own. The mammogram performed on her last visit (she keeps her Irish health insurance since the cost of similar American coverage is prohibitive) has shown a couple of anomalies. She wanted to wait a few weeks until things settled down with the restaurant and with my situation, but her wee mother put her tiny foot down, so her flight leaves Saturday evening. 

She’ll  have the series of tests on Monday with results returned the Monday following, so barring any immediate health issue, she should be back in the States on or about the 20th. of November. 

She’s worried about me getting the healthcare I need. I have labs again next Thursday 13, November,  followed by an office visit with the Oncologist on Friday the 14th. 

I insisted that with the daily progress I’m making, I ought to be able to drive myself both days; they’re a week away after all. 

I think all will be well by then, but convincing a stubborn Irish Lass (yes, she takes after her Mum!) will take some doing.  Still, it is what it is and I’ve had more personal care than I ever thought possible over these past weeks, so whatever…I’ve been blessed.

After all that said and done, the afternoon at DL has been postponed for today. I’ve become weaker throughout the day with the pain increasing in my legs and back, as well.  Some other time will have to do. I don’t want to over-reach or push myself only to end up with a relapse and another hospital stay.

I am not ready for that again.

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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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.

*

Counting the Beats and Pain.

Three weeks and counting. The past few days have been confusing, astounding, and eventful.

Had a few visitors - folks brave enough to face what I look like without screaming into the wind and jumping into the ocean. A few of my doctors have dropped by just to check in. A couple of nurses and techs from the Center have also come by to check to make sure I’m still breathing.

This past weekend was Jazz Fest and, as usual, one of my fave bands were playing at the restaurant. Well, you can imagine my surprise when I received a phone call on the hospital phone from the leader of that band. He proceeded to inform the audience that I was on the phone (the collective reply was, “Hi Wayne, Get Well.” 

Tim then told me he was going to play 2 of my favorites back to back and wanted me to listen to the new arrangements he’d just worked out. I was both thrilled and embarrassed, but he put the phone down before I could voice a complaint or say another word.

Keep in mind that I didn’t have a high fever, but the pain level was through the roof. I have just been zapped with a painkiller and was halfway to happy town when the music began to flow. Autumn in New York drew me in right away allowing me to wallow in my own past images of NY in the Fall.  Great memories. There was great applause when it ended. I think he’t got another winner there.

He picked up the phone, asked my opinion, then before I could give a revise of my own, he launched into the second one.  I Happen to Like New York. I was totally blown away. Yes, of course, I was in tears when that one ended.  But what a treat for a shut-in on a cold autumn weekend.  I loved it.

Linda has called every day from Ireland to check in and make sure things are moving right along. I suppose they are, but achingly slowly at this point.

Two guys from the restaurant showed up last evening for a brief chat, while Nicole came by with bags of junk mail and other nonsense from the apartment.  She took the car out for a drive since it’s been over a month since I’ve done so.

No fever last night either, but great pain in legs and lower spine. I was given  an IV earlier but that’s worn off, so I am about to be put down with another IV push.

I wish I had more energy to sit up long enough to read through, and respond to your many comments.   Maybe tomorrow.

One day at a time, just one at a time.

And so it goes. 

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.

*

14 Hours Saturday

 Slept OK Friday night, but achey at times, painful enough to wake me up. 

Spiked what is called a ‘neutropenic fever’ early Saturday and all energy drained from my body. Any idea of hitting the pharmacy for the scripts was blown away.  Every joint in my body ached with any movement. 

Took my temperature - it was 101.6 and way beyond the acceptable limit, especially after being so recently transfused. Friend Linda took me to the ER where I told the story of the disease, the fall, and events of the past week - three. more. times.  Tiring, that. Finally taken to an exam room and put on a gurney. Fever now 102.

Heart monitor attached, oxygen administered. Blood cultures were taken again as well an effort to reduce the fever.  No transfusion until the fever was down.

Taken by nurse Michael.

I struggled to will my body to respond to the big dose of tylenol to bring that temperature down. Fever finally abated to 99.2 when the blood was ordered. If the fever hadn’t broken, I was to be admitted to the hospital until it did.  

Blood had to be ‘imported’ from Wilmington because of the newly discovered antibodies involved due to the constant infusions. That took 5 hours. They got me rehydrated and left me alone to read or rest.  Sleep, of course, would not come. 

The suggestion was made to introduce more platelets, but I received them only last Monday, so the doctor rejected that idea. 

At this point it would appear that unless some miracle takes place in my body, I am living on borrowed time on the blood donations of others. Things will only get more complicated as my body begins to reject and finally refuse to be cooperative in keeping me alive. Borrowed time, as it were. Didn’t get in until 11 last night. Fourteen hours later.

I’ve had little to eat since Friday, but I’m not hungry. Only thirsty. Pumping my body full of fluids all day yesterday slaked my thirst temporarily. It’s back now.

Feeling slightly better this morning, though still weak and a bit achey. Temperature a bit elevated, but no headaches - yet. If I spike another high fever today, I will need to be admitted to the hospital.

Who knows, for how long. 

I hate writing about this, but it’s the only way I can express myself and explain what is happening in the most sane way possible.  I am not a medical professional; so much of the jargon is way over my head, but I get most of it in the abstract. The prognosis isn’t good.

I guess I ought to be concerned about the apartment, my things, and the car.  I am not. They’re only things, tools and the like. They don’t mean anything to me, really. They are nice to have, but that’s that. 

For the first time in my life I am not worried about paying bills, either. Anyone who knows me knows what a stickler I am about paying bills and my credit score.  Always have been.  Not anymore.

The universe has me in its embrace and I can do nothing but my best to try to heal and hope the body will respond.  If it’s too late and the old body can’t take any more, then so be it.

I will have to be in great pain, or discomfort before I submit my self to hospital care. If I go into the hospital the laptop will go with me. I fear I will be there for a few days, at least, maybe longer. If I fall that low - physically - I will likely give in to their demands. 

At present, I am not living life as meant to be. I live as a caged animal with little contact with the world; isolated from everything I love and need to remain sane and human. Just between you and me (promise you won’t breathe a word to anyone else) I just want this long nightmare to be over. However it may turn out.

Like that old saying: Pain is inevitable. Suffering is optional.

And so it goes.

Throwback Thursday

Weekend at Bear Mountain State Park, New York - 1976. 

Weekend on Bear Mountain in the Fall. Beautiful place. All other pics were of my Ex and have been thrown away. There is only this one of me.

And so it goes.