Working via phone and I ternet with the engineer who helped build the braille device for my friend with neuropathy.

The latest

Mini has been having some digestive issues over the past few days, causing her to make mistakes in the house. I'm trying to get her back on track by walking her more frequently (like, every hour yesterday evening in the attempt to get her to go outside) and when no one is home, crating her instead of giving her the run of the house. We'll see if we can get her wee innards to get back on their regular schedule via that route. Poor munchkin pup.

My father-in-law has been moved to a short-term rehab facility. I'm a little amazed that there is talk of sending him home at the end of this stint, as I'm not convinced that's an entirely appropriate solution. He can't even get out of bed without falling (as he has demonstrated repeatedly, and as recently as yesterday). However, the death panels known as the insurance companies most likely will refuse to pay for inpatient treatment any longer than they absolutely must, so the next step is probably going to be getting a hospital bed in the house and arranging for 24-hour attendant coverage (instead of the daytime-only coverage they have now). I have emailed my sister-in-law, asking what Mark and I can do to help make these things go more smoothly. We live an hour away, so we can't do things that require an immediate presence at the house, but surely we can do SOMEthing to shoulder our share of the duties here. It's not like we live in another time zone, for goodness sakes. I just want to make sure that when we do something, it's going to be an action that is both wanted and needed, rather than some well-meant but unnecessary gesture.

Looking at the (marginally, at best!) bright side, though, Mark has told me repeatedly that his dad wants to die at home, not in the hospital. So I suppose sending him home, rather than keeping him as an inpatient, will increase the odds that his wishes will be met. I hate to think about that aspect of this situation, but we do have to consider the larger picture. The combination of three hospitalizations, pneumonia, and two rehab stints since the first week of July is not an indicator of robust health in a nonagenarian. Anyone who is not in rampant denial can see what direction this situation is going. :-( We are just going to have to keep track of his health situation and seek treatment accordingly if new symptoms appear. And maybe he CAN stay at home, instead of be hospitalized, if the right level of support is in place.

Radio Manilow playing. Tiny dog on lap. Working from home. It's all good. :-)

Back to reality

Well, it was a nice trip to New England last week -- one during which I was too busy out doing things to write any posts about it. But I'm thinking about writing some posts retroactively.

More to the point, I was able to de-stress enough to come back here and not feel like my head was about to explode. There's been so much happening so quickly, between the bereavements (three) and the illnesses (two) in the family, I barely knew which end was up.

And, of course, no sooner did I come back, than the process continued. Make that three illnesses. My aunt's condition is stable, fortunately. But the cousin who is taking care of my aunt has now visited a specialist for symptoms of his own. And my father-in-law has been moved from the rehab facility, to which he'd been transferred while I was on vacation, back into the hospital (his third hospitalization since this month began). I'm particularly disappointed and concerned over this last development, because he had been gaining some ground while in rehab and had improved to the point where he was walking with a walker. Now he is back to being bedridden, which tells me that he's probably going to have to work to regain all the progress he had made previously.

We visited him in the hospital yesterday, along with my mother-in-law. Sometimes hospital visits cause patients to become disoriented. That's the case here. He's having some issues with being an inpatient, as he keeps wanting things that aren't allowed yet (like drinking fluid when there are restrictions on his oral intake, going to the necessary instead of using a bedpan, or sitting in a chair instead of sitting up in bed). The three of us tried to defuse the issue as best we could yesterday, but we couldn't resolve the entire situation and we did eventually have to go home. It's hard to witness someone feeling so out-of-sorts, particularly when even knowing what is going on is not enough to resolve the problem.

I am working hard to not build up to ridiculous levels of stress again. Turning into a walking migraine is not going to help anybody, nor will it solve anything. But life needs to cooperate and stop sending issues for a while. I'm TRYING. I may be only partially succeeding, but I'm trying.

My father-in-law is back in the hospital today (from the rehab facility where he was recovering from a stroke), due to severe nausea.

Dear loiterers in the parking lot: that business closed hours ago. I have three words for you. Nine, One, One. Three more: See, You, Later.

Setting up my computer to print via the new FiOS network. I also downloaded the FiOS app so I can change channels and DVR shows w/iDevices.

NHL fans should know the reference when I say we're passing Exit 16W of the New Jersey Turnpike. Flyers fans will growl at the reference. ;)

There's the "Welcome to New York" sign, so we've passed through Connecticut.

Well, the good news is, the delay appears to have been roadwork. But why have TWO cop cars on hand for that? Hmm.

My habit of whistling the music I'm listening to most likely won't go over well on this bus ride home. I'll spare everyone my renditions.

The reason we needed new buses is that our original driver cut himself badly enough, while removing the bad tire, that he needs stitches.

Bolt sent TWO semi-full buses to cram us onto. I hope we fit.

Hello from the truck stop in Willngton, CT, where we are awaiting the repair of our bus's flat tire. I hope they're able to fix it quickly!

OK, we have arrived at the truck stop.

Heading to a Truck Stop, where we hope to have the deflated tire repaired. Our arrival in Boston will be delayed.

We might be at this rest stop a tad longer. One of the tires on the bus is low. Waiting for HQ to advise. No biggie. I'll just drink coffee.

Generic Imitrex is $40 for SIX doses. Jiminy H. Cricket! Are pharma companies on CRACK? I guess it's better than the name brand price: $70.

Now, the *really* important stuff

There's a solid reason why my fuse today finally burned out on my doctor's office staff. First of all, as I said, they do have a lengthy history of handling incoming calls and refill requests like this. Look through this blog, which goes back nine years, and you'll see I'm not kidding. The most recent iteration of this was as recent as last May.

But there are far more important things going on than my worrying about my aching head. As I posted recently, my father-in-law is back in the hospital. This morning, when I saw Mark's family at the memorial service for his uncle -- the third time since April that the family has convened because of a bereavement -- I learned that they did an MRI of my father-in-law's head today because there is some suspicion that he has had a stroke. He is having issues with swallowing, and he can't walk at all nor get out of bed without falling. Those are some huge red flags, in my book, and so I think they're right to pursue the possibility that the reason for these symptoms is a stroke.

I don't know how long it will take for them to analyze the MRI results and provide answers. But once the doctors come back with some concrete results, and offer a treatment plan, Mark and his siblings might have to sit down and discuss what the best options are for both parents. My mother-in-law uses a wheelchair already. If they BOTH can't walk, that's going to signal a need for changes in the existing routine.

We visited him in the hospital, after the memorial service for his brother. What a shame he had to miss that. :-( To my great relief, he was very placid and happy. He likes the place, he likes the food, he likes the people there. That's a great improvement over when he was first admitted and all he wanted to do was go home.

Still... multiple bereavements in the family within weeks of each other, plus my aunt's cancer going from being diagnosed to needing hospice within six weeks... this is where my headaches are coming from, and this is why I went into Rant Mode over the prescription. I finally had enough.

Now that I've gotten that steam out of my system, though, I'm going to make a point of not breathing flame on anybody else. I am staunchly determined not to turn into Dragon Lady over this.

Spitting nails

Those of you who know me, know I am normally a low-key person who tries to be patient and not raise my voice when I'm on the phone or requesting a service.

Well, I just sent a scathing fax to my doctor's office. The fact that it's entirely out of character for me to breathe flame on them should be, I hope, sufficient for them to sit up and take note.

I have been trying to get my migraine script refilled since FRIDAY. It's now TUESDAY. I called them at 4:40 PM to follow up on the TWO (2) faxes I've sent this week, since my pharmacy had no record of the refill being called in.

The moment the phone rang, I got, "Please hold" and put on hold. For fifteen minutes. Finally I called back at 4:55, only to discover that their "the office is closed" recording was ALREADY turned on! It's not an answering machine -- it just recites office hours and hangs up.

OK, now I have steam coming out my ears. Steam. I opened up the fax app on my iPhone, which allows for one free fax page per day, and wrote:

WHY did you put me on hole from 4:40 PM until 4:55 PM, then when I redialed, you already had the answering machine on five minutes early? IF your office is open till 5, do not shut off the phones WHILE YOU HAVE A CALL ON HOLD.

I have been trying to get my MIGRAINE MEDS refilled SINCE FRIDAY. It is now Tuesday and it's still not done. WHY? I asked repeatedly for this to e done as a rush order. I have been faxing since July 6 so there should be multiple hard copies on hand.

I am leaving for a trip at 6:30 Thursday morning. I deliberately asked six entire days in advance to avoid this problem and have meds in my possession while traveling.

Please refill my Imitrex on Wednesday, 7/11.

Please refill my Imitrex on Wednesday, 7/11.

Please refill my Imitrex on Wednesday, 7/11.

Please refill my Imitrex on Wednesday, 7/11.

[name]
[date of birth]
[pharmacy contact info]

Of course, as they are CLOSED on Wednesdays, I realize that my hope of having them even see this message, let alone act on it, before my trip is somewhere between slim and none. Closer to NONE. But I sent it anyway.

I thought that having a long talk with my doctor, at my last appointment in May, would have really clued him in to the fact that it takes multiple attempts to get a prescription refilled. It's precisely why I have taken to faxing in the first place. They deliberately tie up the phones so people can't get through, by leaving people on hold infinitely, and then if it's near the end of the day they do what they just did to me: block the phones with MY call that was on hold, and then let my on-hold call just die of old age without picking it back up.

I like my DOCTOR. I do. Seriously. But I hate, hate, hate dealing with the office staff on the phone. It's not like I expect a refill to be in the pharmacy's hands within thirty seconds after I place a call; that would be ridiculous. But I don't think it's unreasonable for requests I made on FRIDAY and MONDAY to have been called in by TUESDAY. Doubly so when I asked in both faxes for them to rush this refill as I really do need it.

So, having vented my spleen via fax, I decided to go forward with a plan B. I called the pharmacy myself, explained my situation, and asked if they had an emergency ration that they could provide, in the absence of a refill. No, they can't do that with Imitrex. But they CAN *page* the doctor.

"Good. Please do that. Page the doctor."

So I might get my refill in time for that trip. I hope.

It's funny. When I had that long talk with the doc in May, he was describing how it's hard for an independent family doctor to thrive financially, compared to the doctors who are affiliated with a hospital in some way. But when an independent doc's office staff repeatedly drops the ball on important messages, no flipping wonder patients become willing to migrate to new treatment providers. I really don't want to do that in this case, because I honestly LIKE my DOCTOR. It's the red tape I can't stand. And if you go through this blog, you'll see this by FAR not the first time I've vented about these issues here. Look at May 7 and May 8 from this very year for the previous iteration of "why can't I get my meds on time". It's just the first time I ever vented TO THE OFFICE STAFF.

UPDATE: Well, somebody sure said something. That was fast. I got a call from the office staff, so they either saw the steam emanating from their fax machine as a result of my note, or else the pharmacy paging the doctor made HIM talk to them on the spot. They just called in my refill.

Thank God. At least I can go on my trip and not worry that my head is going to feel like there's an axe imbedded in it. And if you've never had a migraine, then give thanks that you have no clue what I'm talking about. Trust me on that one.

And it still looks like I'll be having yet another word with the doctor during my next appointment, a few months from now. Something's gotta give. I can't keep going through these battles every time I need a refill of something.

Shoot. Mark's dad is back in the hospital. I was hoping that wouldn't happen. I guess he'll miss his brother's memorial service tomorrow. :(

Oh, for Pete's sake...

Ya know...

As if my cousin didn't have enough on his plate, as he cares for my very-ill aunt, I just got a spam email from his account. So some miserable wretch spammer apparently cracked his password. The freaking people who hijack email accounts really need to fall off a freaking cliff, and then when they land, let their computers land on top of them.

I emailed him right away to let him know what's going on. He'll have to check his outgoing mail to make sure there isn't a whole string of nonsense going out of his account, and he'll have to change his password.

He is the last person who should have to be dealing with this kind of nonsense. He has enough to do. Hospice is bringing in a hospital bed, and the existing (giant!) regular bed has to be disassembled and moved to the garage.

Dumb pain in the rump spammers. I wish their computers would liquefy.

Not what I wanted to see happen

On Facebook, instead of referencing Aunt Rita by name when discussing her illness, I've been saying "my relative" for the past few months. Well, evidently, over the past couple days I slipped and said "aunt" when referencing the start of hospice care.

I got a FB message from a cousin of mine this morning. Cousin R's grandfather and my grandfather were first cousins, so I'm not sure what particular ordinal number to assign to that. Second? Third? Whatever. He's my cousin. I leave it at that.

But I digress. His message was along the lines of, "I saw your post. Which aunt?"

Uh-oh. That told me that in all the confusion, he might not be aware of the most recent events that have been going on. It's understandable, as we're talking about a health condition that has deteriorated very rapidly in just a few weeks' time. Five weeks ago, we were all celebrating her feast day in Philadelphia, and now she can't even sit up from a lying-down position without assistance.

Well, the last thing I wanted to do was deliver bad news via an email or a Facebook message, so I called on the phone instead. And unfortunately, I had to break a lot of bad news via that call. Most of the bad changes have happened in the past few weeks, and he wasn't aware that things had deteriorated this far, this quickly. But maybe it was God's providence that my cousin saw that post and it said "aunt", because otherwise, he might not have been apprised of the situation until even more downturns took place.

It's perfectly understandable that my aunt's son has been so preoccupied with taking care of her, he hasn't called every last branch of the family yet. Between working full-time and caring for his mother, he probably hardly knows which way is up right now. So at least now the necessary information, sad though it is, has been disseminated a bit farther than before. That's one chore that's been taken off my cousin J's shoulders. I hope Cousin R can help spread the word, as I haven't got the phone numbers to anyone else from his branch of the family; I've only got his phone number.

Argh, though. That wasn't how I was expecting to start this day.

Mark's dad is home from the hospital, so that's good news. Thank God for big favors.

OK, one more good news item

OK, one other positive thing happened on Friday, though it's dwarfed by the importance of what's happening with the PEOPLE in my life. Nonetheless, we need to count our blessings whenever/wherever we find them, so here I am announcing that the piece of tech I invested in arrived today.

I want to learn to write apps for iOS (iPhone and iPad, in other words). Specifically, I want to write ACCESSIBLE apps that will be useful to the people I know. In order to do that, I need some training. I have 15 years of background in IT, especially on the programmer/analyst side, so I know my way around writing code. However, what I need to learn (and in the case of C, refresh my memory on) the languages that are used to write iOS apps.

So I enrolled in two online courses (a two-for-one deal)... only to discover, after I started watching the videos, that I needed a Mac in order to do some of the work. Moreover, Apple has not released a SDK (developer's kit) for Windows, so if I'm going to be writing iOS apps, I need to use a Mac.

So, what to do? New Macs are way out of my price range at this time. So hello, eBay. I found an early version of the Macbook Air that I could afford. It hasn't got some of the improvements and features that the newer Macbook Airs have; I know this because I was making use of my cousin's MBA when the rest of the family was in the treatment room with Aunt Rita at the specialist's office in May. The room was tiny, and couldn't fit the doctor, several interns, my aunt, my parents, my cousin, and me. So I was elected to wait in the waiting room with everyone's belongings. My cousin let me use his computer while I waited, and it happened to be a newer-model 13" Macbook Air. But I'll do without the extra bells and whistles of the newer models because, as I said, my wallet has limited impact these days. I have to balance need with rationality.

Anyway, my machine arrived on Friday, so I spent some time setting it up with Xcode, so I can start creating those C programs.

Oh, for mercy's sake. Really? MORE issues?

Aye yi freaking yi.

The good news is, my parents went to see my aunt today and she was mentally 100% herself. That's outstanding. She is, however, still extremely weak and can't get up on her own. She can't sit up from a lying-down position and most likely can't walk. Hospice workers will be on hand from now on.

And the bad news? My 90-year-old father-in-law is in the hospital with pneumonia. My sister-in-law called Mark at work today (never a good sign, as she normally waits until evening when we're both home to call us). Dad fell out of bed twice last night. They took him to the hospital, and discovered he has pneumonia in one lung. Mark said they admitted him "as a precaution", but I'm not sure how much of a precaution it is when there's pneumonia present. I think at that point they have a perfectly good reason to treat the person as an inpatient.

So, we'll see where all these things lead us.

I faxed my doctor's office to have them refill my migraine prescription, for the first time in a few years. Stress is my one known migraine trigger, and I've been getting various levels of headache lately. I only have one dose of Imitrex left, and I want to get it in the house sooner, rather than later. A person can only take so much of this.

A little old Spanish-speaking lady keeps leaving voicemail on my Skype number. I called back but she can't understand me.

Still working on wrapping my mind around today

I'm still wrapping my mind around the events of the day. Disappointments from yesterday will have to be set aside and dealt with some other time. If they even NEED to be dealt with, that is... it's entirely possible that the most constructive thing I can do is just let that other stuff drop. That's how I'm inclined to handle it, anyway. I need my energy to deal with much larger issues. Everything else is getting filed under "Don't sweat the small stuff, and it's all small stuff."

Hospice. I am actually in favor of this step, largely because I feel like we have reached the point where it will be beneficial to have a trained person on hand for as much of the day as possible. Plus, it's not news to the family that the best thing to do is engage in palliative care. Heck, we've known *that* since the MRI results came back in April. It's not easy to accept, but we all know it's the truth. At least we don't have to deal with anybody walking around with false hopes, or acting like seeking hospice care is a form of giving up. It's not. What it IS, is doing the right thing.

Still, it's emotionally painful to realize that we are most likely looking at a short time frame, rather than a long one. Even knowing in advance that this is a fast-moving disease, it's still a little surprising that we've reached this point after only three months. Wait, I take that back -- it's not EVEN three months yet, not until later this month. Wow. Geesh, that was fast. No wonder the specialist in May said to her that she should eat whatever she likes (even though she's diabetic). Maybe he was well aware that she might as well not postpone or turn down enjoyment.

I keep consoling myself with the fact that there is no pain. Lethargy, yes; weakness, yes. But no pain. The presence of pain would make this infinitely harder to deal with.

I'm researching the average duration of hospice care. My family clearly needs to be prepared for things to happen sooner, not later. :-(

Chocolate: the OTC antidepressant. In the form of a Special-K Protein Meal Bar and WhoNu Oreo-clone cookies. At least it's healthy that way.

And the hits just keep coming. It's time for hospice to be called for my relative. Do please keep the prayers and good thoughts coming.

By the way...

If, perchance, you say something hurtful to me (or something that you suspect is going to be hurtful, but you choose to say it anyway), and my response is nothing at all -- not one syllable, not even a glare -- it's not because I'm reacting well to it. Absolutely Zero Reaction is a red flag that you've done some internal damage.

What a disappointing night. Never saw it coming. Live and learn.

I won't be creating the opportunity for a repeat of how I feel right now. If I do, it'll be my own fault if I get hurt a second time. Like the proverb says, "Fool me once, shame on you. Fool me twice, shame on me."

That old left-out feeling is back

The world is full of imprecations that we should "Dance, even if no one else is watching." There is no shortage of affirmations and inspirational posters urging us all to be ourselves, no matter what.

I've followed that dictum throughout my life. As a result, throughout my life, I've run into situations where people just don't "get it". They have no idea what to make of it when I decide to Be Myself, because my perspective on things is from, shall we say, a unique angle that not everyone immediately perceives. Sometimes, I feel like a piece of modern art, with people walking around looking and saying to one another, "What on earth is that supposed to be?"

I'm used to getting that reaction from strangers and acquaintances. It doesn't change what I'm doing one bit. Some of them wander off, some of them stay on the periphery, and some of them take an interest, and stick around to join the inner circle. And one thing is guaranteed: when you're unique, some of the individuals who stick around will have their own interesting point of view to share.

But it's kind of disappointing to get a "What is that supposed to be?" response from the people I thought were closer to me, and knew me better. I got that treatment from an unexpected source today. So even my inner circle doesn't always get it. So noted. I won't make the same mistake twice. Being hurt once is sufficient.

Well, whatever. I'm still going to dance even if no one is watching. Or even if people are telling me to get off the stage. Or even if people choose to walk out of the theater rather than watch. When it's MY theater and MY stage, if I choose to dance, I will. Feel free to stick around and see the show or not, as you choose. But if you miss something interesting later because you walked out now, that's not my fault.

Jaromir Jagr signed with the Dallas Stars. Drat! I really liked him in Philly, especially on Giroux's line.

WHY did I forget to put on sunblock? I have a sun allergy. Now I'm itching like a fiend. GRRRR. I hate making dumb mistakes.

Home from visiting my friend, and catching up on email. We're crossing our fingers that my friend will be discharged tomorrow, KNOCK WOOD.

My friend is out of catheterization. Thank God! They fixed what they could. Now he needs a new room b/c the one he's in is SWELTERING hot.

If you get a chance, please send some prayers and positive thoughts for a friend of mine getting a heart catheterization today. Thanks!

Yay FiOS! My hubby will be elated to know it will reach this neighborhood this month.

Caught a 1998 movie about a comet hitting Earth. The CGI tsunami leveled the CGI Twin Towers. Who knew they'd really fall 3 years later? :-(

The Stages of Grief

It has already started.