Personal Updates, New Year's Eve 2014

Things are settling down here (I am going to post personal updates here now so I will never be getting too personal on Facebook again after the events of last week!)

I want/need some time to be alone and relax and I know mom does too.
We go out at least once a day to shop or bank or see a doc or get medications or some other reason but the calls into the house have slowed and the constant stranger visits have all but stopped.

Only close family and two very good neighbors who have been so very helpful are still around, but keeping a distance.
Now it's usually mom who reaches out during her daily call marathons every afternoon (I counted 8 outgoing calls yesterday afternoon!)I sometimes get to watch a show or play a game but one day we'll settle into a routine where I'll put some more time back into my friends.
I do everything I can for her around here (NO COMPLAINTS!) but when all of that is done or I need to wait (early morning and places aren't open yet or late and they're already closed) I go upstairs to either try to rest, organize my little space, or just cry a little.

Mom knows I'm here, a yell up the stairs is all it takes and I am always ready to run downstairs (well, limp) and do whatever needs doing.

The slower pace seems to be letting me gain some strength back, but my achy arms & legs still need a bit of a break.

Sometimes it's easy to forget that I am still sick myself.
Although the kidney stone fragments are nearly all out (I hope - I passed just a little bit this morning) I still rely on the Percocets. I will have to call in for ANOTHER frakking prescription on Friday.
I try to hold out as long as possible every morning to see how bad the pain really is, but I can't hold out for very long :(

At least in the afternoons/evenings (depending how much we do when we go out) I have been able to cut back and it's longer between doses, but to still have to rely on them depresses me.

Everything else seems to be getting better.

The daily crying bouts have stopped and come irregularly now (mostly in the morning, when I wake up from the pain and can barely roll myself out of bed and that first minute of trying to stand up!)

Overall, things are getting better day by day, things are slowing down for both mom & I which is good.

I will get mom back on a somewhat regular pre-death/stroke routine after the new year when her Senior Group meetings and Senior Yoga treatments start back up.

One of my most helpful neighbors, Donna, from down the street called me after I dropped mom off at church last Saturday night to tell me not to come back to pick her up that she was there too and would bring mom home. That was great. I am not religious, but I respect mom's want/need to go to church, and I'm glad she does and I'm only too happy to bring her & pick her up, but as I explained to her (and she understands) that I would feel hypocritical for me to just stand there while the mass was going on - just going through the motions (standing, sitting, kneeling, etc) but not uttering the words seems wrong and I'd start getting lectures from others about why and I don't wish to be rude, in a church, explaining that I don't believe and why.
I went to Christmas Eve Mass with her, I could not let her be alone for that, but with regular masses I just can't do it.
Knowing now that Donna goes to mostly the same mass every week (when she can and her work doesn't change it) I feel better knowing she'll be going with a friend, someone I like and trust.

You can't drive for 6 months after a stroke, and I know that hurts mom in that she feels restricted (I certainly would not take the news of not being able to drive very well!) but I always have and always will take her where ever she needs/wants to go.
Mom's feeling better, I still feel like shit, from kidney stones to general body aches and pains, but we're both alive and taking it day by day - what more could you ask for?
That's all for this week.
Have a great day everybody who reads and have a Happy (and SAFE) New Year's Eve!

Let's all have a better 2015!!!

Unexcepted Seismic Shift

I'm awake :(
I took Trazodone [http://en.wikipedia.org/wiki/Trazodone] last night around 10pm hoping for another good night of sleep. It helped last night and this morning I felt pretty good (aside from the kidney stone pains, but the Perc helped with that) and the Valium kept me calm most of the day. Then I started to realize what was coming.
Finding out mom is doing so well (makes me happy) and hearing that she could possibly be released this weekend made me start to focus on what needs to be done.
Last night I started to crack (even on the Valium.)
Last night I didn't sleep so well (even on the Trazodone.)
I woke up at 3:30am. I was woken up by kidney stone pains, but then my mind woke up too.
I tried to go back to sleep.
My mind kept running through checklists of how to clear out the upper floor of mom's house, what to bring from my condo, what am I going to do with my cats (will they get along with Ami? will Ami get along with them? will my sister be able to absorb 2 more cats? will the 2 new cats get along with her cat Nina? what if one (or both) don't et along with her? I don't want to put them in shelters.
I've had them both since they were kittens - and when Saquarra was born, Michael & I visited her daily from her being 2 weeks old until we took her home around 8 weeks old. We bonded. I could (and often did while visiting) hold her in the palm of my hand. While she was Michael's cat, she's sort of always been mine. When we were able to take her home she stayed at my old Racquet Club apartment until Michael moved out of his house after his mother died. So we bonded (Saquarra, me & Moon.)
Saquarra & Moon were like sisters. If I say the name Moon now Saquarra will look at me and meow. It's not your normal "I'm hungry!" meow, it's a "where is she?" meow. When I sit in a chair she's immediately on my lap.
When I lay down in bed she's immediately curling up in the crook of my arm. If I stand close to a counter or chair she will jump up on my shoulder.
She will sit on my shoulder for a long time as I walk around doing chores.
I have to remove her myself 90% of the time, she rarely gets tired on her own and jumps off. She's my buddy.
Fleur has also recently become more of a lap cat too.
She was always the baby, and with Moon's strong personality and Saquarra being the "middle child", Fleur was always content to just be on her own (kind of like me.) After Moon died, she's slowly come out of her shell and now she also will inevitably make her way onto my lap or lay on my chest at night in bed.
I'm so used to two cats now always hanging with me when I'm home that I cannot bear the thought of possibly having to give them away to a shelter.
They're both pure breeds, but they're older now.
Older cats usually don't get adopted.
If my sister is able to integrate them with Nine, three cats is a handful.
I'm sure they'll get all the love they can handle if they go with her, but I am asking the Universe to please, at least, give me a little bit of a break and let Ami adapt well to two new play pals.
Ami is a sweetheart, but she's big and while I know she'd never intentionally hurt the cats, her size & strength could unintentionally hurt them if she's too excited while playing. She's quite excitable but she does calm down quickly now.
They have all met before. Dad brought Ami to my condo to visit twice.
Both times (while Moon was alive) both Saquarra & Fleur didn't want to deal with Ami, but Moon stood her ground. I was quite impressed.
Ami would put her front down and her butt up (in the standard dog "Let's Play!" position) and bark, but Moon would stand about a foot away, standing strong making it clear that his was HER domain and she wasnt ready for Ami to start any of her shit.
The two cats haven't really spent any time with Ami, they would go into other rooms and wait for the intruder to leave.
I am hoping that with some time together they can become great pet pals.
When I move to mom's I am going to cancel my Comcast at my condo (since I'll practically never be there until I eventually find the time to empty it and sell it) and get Verizon service at moms.
Mom has Verizon phone service right now, but it's the most basic service you can get and she still uses a prepaid calling card to make calls outside of Pennsylvania. I am going to cancel her Comcast cable service (also bare bones) and bundle the Verizon phone, cable and for the first time in history the McCartney Trellis house will have internet service.
I did a little research last night (and a flyer came in the mail last week that I held on to - for mom originally - that is a pretty good deal, better than their normal offerings) and even with super cable service and good, fast internet speeds, it will still be about $100 ~ $75 cheaper than what I've been paying for Comcast.
I will cover all of that myself at moms house. I can easily absorb that.
Mom will have Call Waiting for the first time, which is an absolute necessity especially since we both now have health issues.
I guess I'll need to get a storage shed. I have a lot of shit I've accumulated during my bachelor life. Some toys & crap will go to my nephews & niece (one nephew even asked me for my 60" HDTV last night!) but there's lots of stuff I'm not ready to give away just yet. I may not need them in my new home, but I don't want to get rid of some stuff and I'm not ready to let some stuff be destroyed by children either.
(Children destroy stuff, it's just their nature, I don't blame them.)
I'm like the 40 year old virgin (except that I'm a 44 year old virgin) with all my toys & collectibles, but since I will most likely never have to worry about getting a girlfriend I don't care what other people think of that.
I don't play with the toys, but I like looking at them. Some have been long time hunts that I finally found or just something that reminds me of a movie which reminds me of a certain time in my life. I am a child. I hope to always remain a little bit of a child. I now have to grow up more, but I can't just let that inner child go either. Very little gives me joy and I'm not ready to throw out the things that give me even a little joy.
Video game/relax time will be severely reduced.
I will have to give up being a Manny (hopefully not permanently, but that might be a potential reality.) I love my Manny job. When my mortgage stops and whatever profit I make on the sale of the condo along with my disability annuity, I should be okay as far as money is concerned, but I will absolutely miss the daily interaction with my nephews & niece.
They keep me on my toes and have been a great source of distraction from the kidney stone pains. They can be frustrating at times (because they're children and that's what children do) but I always left there smiling about whatever went down that day.
I'm sure I'll still see them often. I have a feeling they'll be visiting Mom Mom often (and me at the same time by default.)
I am not sure there will be enough hours in the day to do what needs to be done.
Already today's To Do checklist is pretty full.
And Monday I see my urologist to discuss many things.
If the CT Scan I had on Wednesday shows something bad...I don't want to have to have another KS procedure. I can't be hospitalized.
I live with that fear every day and now I not only have myself to worry about but I have to keep a close eye on mom in case of any of her own medical concerns.
We'll need to have the downstairs bathroom refurbished (she can't get into/out of the tub for baths, so we'll need to convert it to a shower.)
We have a family friend who can do the work.
These are but a few of the things that are running through my mind.
How's THAT for an update?!?!

Alone.

My dad died twice.
The official death is two weeks ago today. So Thursdays suck now.
The first time was the day before. So Wednesdays suck too.
His heart beat for the last time @ 3:31pm on Thursday, November 6, 2014.
The cardiac arrest (when he really left us) was about 6:20pm on Wednesday, November 5, 2014.

I don't like nights. Every night I am exhausted.
Every night when I close my eyes I see my dad's face but it's not the peaceful face I last saw, it's the one I saw when I went to my folks' house after mom called telling me "It's dad!"
The night I had to park 3 houses down because their street was crowded with 2 fire trucks, 4 police cars and an ambulance.
The night I had to push my way through what seemed to be the entire neighborhood gathered to see why there were 2 fire trucks, 4 police cars and an ambulance.
The night I walked into their front door to see my father, naked, laying on the living room floor surrounded by EMTs - and his eyes...just...staring.
Not blinking. Looking off into space.
The night I saw my mother on the other side of the house, being comforted by firemen in the kitchen, as she looked at my father laying on the floor.
The EMTs told me they brought him back after 3 Epi's (Epinephrine shots) and a shock (defibrillation) and his heart was still going but it was not looking good.
They put him on the stretcher and rolled him past me, still standing next to the front door, unable to comfort my own mother, prevented from going further by the EMT who updated me.
As dad rolled past...I only saw his eyes.
They're all I could see.He was not blinking.He looked gone.
That image is what I see now when I close my eyes.
I so wanted the last image of my dad to be the one where he was resting peacefully in the hospital bed after his heart beat for the very last time.
He looked like he was sleeping.
Why won't that image come back to me?
If I'm seeing my dad's face (and eyes) from that night every time I close my eyes I can't even imagine my mother's nights as she probably relives the events that led to those eyes. I only saw the aftermath and I'm traumatized.
Then I go on to relive the waiting, the wondering, then the day we had to free him. My nights suck.

Kidney stones don't care either.
Pain meds are long gone so I've been in absolute agony all week - and my doctor's appointment to talk about pain management is still 2 weeks away (the earliest they can get me in.)
I am trying to do what I can for mom, and while a lot has been done, I don't feel any sense of accomplishment.
I see the mountain of work still ahead and I see no way to conquer it.

I don't want this taken the wrong way, I'm not complaining (obviously I am in a general sense, but now getting specific), I am not jealous of my mother or my sister, I just feel so alone because my mom and my sister have so many people who are rallying around them - I don't.

I have my sister and mother, but I won't add to their grief, so I have no one to really vent to (aside from a really great friend who I know would listen to me cry, just listen, but I don't like it when I get like that, so I am trying to avoid it.)
I have no one who has given me a fruit basket.
Not that I want one, mind you, it's just the thought that I have no one.
No cards. No knocks at my door. No phone calls.
I normally like being alone. I'm most content when alone.
But now I've never felt so alone.
I realize now that when I die, aside from family and some great Facebook & gaming friends, I have no one who will care.
My father's funeral line had to be cut off after an hour.
Mine will require all of 5 minutes...maybe.
I just get so sad when I see all of the sympathy cards for mom.
My sister has cards from people she works with and her friends.
No one knows me so I got nothing.

I do not want stuff.

I am just feeling the crushing weight of loneliness during all of this.

The Neverending Story

I had another Ureteroscopy procedure on Tuesday, September 2, 2014, and had the stent that was in my left ureter taken out at the same time (it was put in on August 20th while I was in the hospital.)
Anyway, over the last 4 days since the procedure I had felt not quite recovered.
I was passing blood clots quite often, my urine was pink most of the time (from the blood) and I felt "chips" trying to get out. I even passed a few smaller chips during those days.
I thought I'd not have to take any more Percocets once the stent was removed.
I had hoped the drama would end with the removal.
But while the stent was in for 2 weeks more kidney stones started growing on it like barnacles on boat hulls. When the stent was pulled out, all that crap was shaken loose and has been hanging out in my ureter ever since.
This afternoon I started really feeling nauseous.
The pain was growing exponentially again.
I took Percocet around 3pm and it didn't help at all.
I went into bed, wrapped myself up in my blankets (even though it's like 90° outside and 80° inside) and thought if I relaxed, and tried to sleep through it, it would pass (either go away, or come out.)
I knew it was BIG and I knew it was sharp.
I fought the urge to go to the E.R. again.
What would happen there any way?
They could give me Dilaudid, but then they'd either send me home (and the Dilaudid would wear off eventually and start all over again) or my doc would be called and he'd want to go back in (to me) and maybe even want to put another stent in, keep me there in the hospital for days and days...who knows what!
I WAS NOT GOING TO GO THROUGH ALL OF THAT AGAIN!
I spent the last 3 weeks doing all of that shit and I am not going to keep doing it if I can help it at all.
I couldn't sleep. I twisted and turned. I contorted into strange positions and finally I felt a POP!
It found its exit!
Now - to get it OUT!
I hobbled to the bathroom, stood in there with a cup to catch this fucker and pushed!
It was an avalanche of chips and gravel and blood clots.
After recovering, I documented the result:

I am BURNING something fierce right now, but the pain is going away.
Out of all of this shit there were four really BIG chips that were sharp and were obviously what I was feeling - all that other crap must have been behind it pushing to get out!

I REALLY REALLY REALLY hope it's all out now (I passed a bunch more gravel earlier this morning also.)
This is tiresome and depressing.

The Best Laid Plans...

So my Summer ended the way it started.
The first indication of a problem stone was on Wednesday, August 13.
I started getting pains high up on the left side of my back.
That's also when the blood & cloudiness started.
Both indicators that a stone was making its way down from the kidney through the ureter.
[http://www.webmd.com/kidney-stones/kidney-stone-in-ureter]
As long as it keeps moving I thought "I have enough time."
I babysit my niece & nephews for my sister and last school year ended with renal failure, a bilateral stent [http://www.nlm.nih.gov/medlineplus/ency/article/002303.htm], a couple of procedures and eventually ended with me coming home for a week with a Foley Catheter. [http://en.wikipedia.org/wiki/Foley_catheter]
What a grand finale that 3 week experience was!
This school year begins like last year was supposed to end, with my sister's school starting while my niece & nephews have 1 more week off. So that means she needs someone to babysit for that week, 8+ hours for each of those 5 days.
Seems daunting, but they are more laid back (no school bus to catch!) and we can do more fun stuff.
I look forward to all the days I get to do this (so there's one positive thing about being chronically ill and unable to hold down a "regular job.") I am lucky in that respect.
So I was getting all psyched up for this coming week (Aug. 25 ~ 29) but pains on August 13, while seemingly far enough away to not be a major concern, started turning into something more threatening as time went on.
From the 13th to the 18th (Wednesday to Friday) I tried my usual "wait it out", and for a while it seemed like the best plan. The stone was moving, the pain was moderate most of the time, and when it spiked I did come close at least three times to calling my parents for a ride to the E.R., but I never gave in - perhaps I should have.
Friday the 18th the stone was really low, it felt like had reached the entrance to the bladder (but it was still in the ureter) and I was just hoping it would make that final push from ureter to bladder and then the pain would cease and I'd then just have to wait for it to float around the bladder for a bit (could be hours, could be days, it could even take weeks) but a kidney stone in the bladder doesn't hurt (unless it gets stuck in the urethra on its way out of the bladder!)
The pain got to be too much but I really felt like i could still wait it out if I could control the pain, so I called my urologist and he gave me a prescription for some Percocet [http://www.rxlist.com/percocet-drug.htm] which would be good enough to reduce the pain to let me get on with Life while the stone decided what it wanted to do.
I waited Friday, Saturday, Sunday, Monday, Tuesday, and when the pain hadn't decreased or the stone hadn't moved in those 5 days, I called my doc again to see if maybe he could do something more proactive. I explained about my commitment which was now rapidly approaching next week!
He wrote out some orders for a KUB X-Ray [http://medical-dictionary.thefreedictionary.com/Kidney,+Ureter,+and+Bladder+X-Ray+Study] and a Renal Ultrasound [http://kidshealth.org/parent/system/medical/renal_ultrasound.html] which I picked up from his office and then went to 3 different places to try to have done.
I tired an imaging place right across the road from my urologist, but their Ultrasound technician wasn't in.
I then tried the satellite Radiology/Imaging office of a closer hospital which is located right next door to my Primary Care Physician, but they require appointments (the place was a ghost town, no one there except the nurses & techs, no patients) and the first available was in September!
So I wound up driving up to St. Mary Medical Center anyway (which was the initial plan, but I thought I could save myself the slightly longer trip and the hustle & bustle of a large hospital.)
I got there and after 3 hours I had the 2 tests done, they gave me the "films" (on CD) and the reports and I dropped them back off at my Urologist's office then went home to wait.
After reviewing the reports & looking at the films, my doc wanted to go in and remove the large stone that was the bane of this experience. He told me he'd remove it after his office hours and to go to the E.R. to prepare for the procedure.
I called up my folks for a ride, they picked me up, we got to the E.R., I told them I was told to come through the E.R. as my doc was preparing for a procedure. They started to go through the usual E.R. process (triage, vitals, history, etc) when a call comes from the OR wondering where I am.
This starts a tiff between the E.R. doc on call and the OR about where I should be.
This moves out of ear shot and an hour later I'm finally being taken down to the OR for the procedure.Before I even leave the E.R. holding area, my folks dash out taking all my possessions.
The nurse who was going to wheel me down to the OR was shouting after my folks that there's a waiting room down there and they can wait there or go to the cafeteria, but they just kept walking.
She seemed surprised by this, I explained that they hardly ever wait any more but they'd probably be back when they thought it was over. My nurse thought it was a strange way to treat someone going into an operating room, and I agree (silently, to myself) but as much as it stings (to have your parents just kind of walk away and not walk with you to the OR) I know they don't like waiting either so I let it go.
When I get wheeled into the operating room (my doc is not yet in there) there are the usual occupants; anesthesia docs/nurses, other nurses, techs, etc. and I swear at least 2/3 of them turn and say "Rob?!" when they see me. They ask what brings me back, I say "the usual", and they said they were sorry since they had just seen me like 6-7 weeks ago!
I felt like Norm from "Cheers."
My urologist comes in and he asks if I'd like to go home tonight - I tell him, for me, that's top priority as I have to prepare for my duties coming up in 5 days! He says he'll do his best to get me home ASAP.
Then I presume they did their thing because I woke up in the recovery room.
My folks had returned, they gave me my stuff, said their goodbyes then left.
I thought that was odd (well, more odd than usual.)
I then had to pee really bad and I did (with all the horrible things you'd expect after someone had been inside you through the most convenient passageway available.)
It stung, it was bloody, it was messy, but there was no string, so I was happy.
After a little while I had to pee again and as I shifted in my bed to get a better angle (for better flow) I felt a pang of pain in my back on the left. I knew that pain, and hadn't hoped to feel it again, not now, not after not seeing the zip cord hanging out of me!
I peed again, and after all the mess, there it was - the string.
That cursed black zip cord of misery.
I had a stent.
Not good news at all. It shot down my hopes go getting out Wednesday night and going home.
I talked to the nurse and she said I did have a stent and that we're waiting for a room.
So I was being admitted.
She said it was just to be overnight for observation.
Okay. One night. Fine.

The stent doesn't make me happy, but he must have felt it necessary and with Percocets I can at least keep the pain low enough to do what needs to be done without too much agony.
Thursday comes, I see my doctor, and he tells me of the stent, and how he thinks he got most of the big stone that was the problem, but I appear to now be running a fever and they're going to watch me to be sure it's not an infection. I hope the fever breaks and I can be home Thursday night.
Thursday runs its course and turns into Friday. The fever breaks but the Infectious Diseases department sends the vampires to collect lots of blood and urine from me to test what the infection might be.
I also get a visit from my Nephrologist (kidney doctor) who is concerned about my high Creatinine levels [http://www.medicinenet.com/creatinine_blood_test/page2.htm]. These are apparently new concerns because back in June when I had the renal failure episode, my levels were returning to normal, otherwise they would not have let me out. So this is a new rise in my Creatinine level so now he's concerned about either an infection (which would be easy to treat) or Hydronephrosis [http://www.healthline.com/health/unilateral-hydronephrosis] which could be a bigger problem indicating a blockage by perhaps uric acid crystals growing in the kidney reducing flow.
This type of problem might require more intensive & dangerous surgery.
So he takes some urine to sample also.
So now, I wait.
I have no fever Friday at all, though I am on an IV anti-biotic, which could have cleared up whatever was going on.
Saturday rolls around and I'm feeling like a caged animal and all I can see if Monday looming up ahead and I'm not yet prepared!
I feel useless and here I am again causing problems for my loved ones.
Finally my doc sees me Saturday around noon and says there's no infection, no blockage, the fever is gone for 2 days now, and my creatinine levels are returning to better levels. I can go home.
I am somewhat relieved, but he wants to remove this stent and go "back in" to go higher up the ureter to make sure it's clear, but he knows this week I am unavailable, so he's scheduled it for the day after Labor Day, Tuesday, September 2, 2014.Initially I call to let my folks know that I'm being discharged but it could take a while (it took 4 hours last time!) and that I'd call when the paperwork is done and in-hand.
Mom says Dad went to a movie.
Movie > Son = Hurts.

I had my IV removed and then it takes 3 ½ hours to fill out all the discharge paperwork before I can actually step foot outside the hospital.
That's ridiculous, but at least I'm now free.
I call my folks for a ride home and my mother comes to get me because dad is making some new experimental sauce at home.
Sauce > Son = Hurts.My doc sends me home with prescriptions for Bactrim (and anti-biotic) and Percocets (for the pain.)The pain is moderate, but the Percs are helping.
Today will be prep day for me, in case my niece & nephews decided my place is more fun to hang out in than their own home.
I have cooler toys!
Anyway, so now I have a stent and another pending surgical procedure looming, and my hopes of getting ahead of this problem instead of waiting for it to get bad enough for the usual routine, have gone and completely blown up in my face, making everything I did to try to prevent this seem utterly futile.
I told my friends I was going in to have a stone broken up and hoped to be home Wednesday night, but I wasn't able to get online and tell them what had happened until Saturday afternoon.
So this is what was occupying my time during those missing days!
My next post will probably be about my experience on September 2 when this stent is due to be removed....

I'm So Tired - Of Everything

I had a good few days down the shore last week, but Life, as always, returns to normal.
"Normal" for me is miserable.
I am in constant and severe, pain; my back (kidneys) hurt, my shoulder that I had repaired 9 years ago is acting up. It doesn't feel like it's re-torn, I still have full range of motion, but goddamn it fucking hurts ALL the time now. It's been getting bad over the last few months, and the 90 minute drive to Ocean City, NJ made it feel like it was going to fall off (just hanging onto the steering wheel was a chore!)
I continue to pass fragments of the stones that have been giving me grief over the past month, and it feels like another chunk is stuck today, right where it hurts the most. So I'm drinking like a fish to try to force that fucker out ASAP!
I saw my Nephrologist (kidney doctor) yesterday; I had made a routine appointment way back in December 2013 and completely forgot about it (been a little busy as of late) but I kept it.
My Creatine levels [http://www.medicinenet.com/creatinine_blood_test/article.htm] are all fucked up because of the very recent renal failure, so the years of work getting those levels back up have completely disappeared, so once again I start from scratch.
I have new lab work that needs to be done (to test the current levels - along with a whole host of other levels they're keeping an eye one) but I'm going to put those off until later in the week.
While driving to/from the doctor, my father (who always comes along, mostly because I like a second set of ears as I'm usually in a foul mood) decided to berate me for never accepting my mother's recent dinner requests. She asks me to come over for dinner, but I have been passing on those as of late because the kidney problems have made me extremely nauseous and I have lost 18 pounds in the last 3 weeks. He made me feel like shit even though I told him I really wasn't hungry and not eating (something that was confirmed when he witnessed the ritualistic weigh-in at the doctor's office. He was surprised I lost 18 pounds but I told him I wasn't lying to get out of going over to their house to eat, I REALLY AM sick.)
So today mom calls and asks me to come over for steak sandwiches.
I REALLY don't want to (again - VERY nauseous all the time, especially now with the stuck kidney stone!) but I can't keep saying "No", so for dad's sake (and yes, hers too) I said "Yes."
She's also coming over to clean my place today.
I know she's gonna give me tons of shit because I haven't been keeping up with cleaning as, you guessed it, I've been HURTING and sick the last 3 weeks!
Not looking forward to the admonishments.
Also on the way to the doctor's appointment yesterday, Life threw me another glitch: my car's "Check Engine" light came back on.
This after 2 separate repair jobs in the last 2 months that cost about $2,000.
So what is it now?!?!?!
It just never fucking ends.
I am exhausted. Mentally & physically exhausted.
I got a bit of a reboot while down the shore (It is my "Happy Place") but that also seems to have evaporated with the prospect that "it" (Life) just never stops kicking me in the nuts while I'm most helpless.
I cry almost every night, sometimes just randomly during the day and always in the morning when I'm trying to get out of bed and get my body going.
I feel so weak.
Not just physically, but I'm emotionally weak, which is why I'm always a Debby Downer.
I try to look on the bright side of Life, but I get very few (and very brief) glimpses of it that it's hard to remember it exists. It's hard to be optimistic when my life has been filled with disappointment and pain for the past 18 years - nearly non-stop!
I cry when I wake up because...well, most days it's because I wake up.
Before I know it summer will be over and it'll be back to the grind (which I mentally love) but it takes a huge toll on me physically.
It's hard to keep hoping for an end to all this when even a "light at the end of the tunnel" no longer ever presents itself.

Special (Belated) Birthday Presents

I was lucky enough to feel good enough on Wednesday (July 2, 2014) to drive myself down to Ocean City, NJ and spend a few days with my sister & her family.
It was a great 2½ days, with good weather (even though Hurricane Arthur was threatening us all week), we only had some rain and strong winds for a good part of Friday (July 4), then it cleared up.
I was physically beat by then (Friday afternoon) so I decided to come home.
Plus, I was feeling - something. Not quite stones, just uncomfortable.
So I came home Friday evening and all was still well.
I slept like a rock Friday night!
Saturday morning (July 5) I woke up and was feeling really "off".
That sort of feeling where you don't really feel great, but you can't quite figure out what's wrong?
Not a headache, not a backache, not kidney stones, just - something.
So as the day wears on - it happens.
POW!!!!
A big gush of "gravel" (more kidney stones) - plus a little extra: out came a clipped piece of stent string!
(The bit that's supposed to be tied to the stent to help pull it out)It must have just been floating around in there for the week!

 

I had a stent in me last week (along with my catheter) and there was no usual string to pull it out with (most likely because it would have caused problems with the catheter) so my doc must have clipped it off when he inserted it, and this piece was just happily floating around all week.
Anyway, it's out, and I feel a bit better.
The "odd" sensation is gone (now I know why I was feeling "off"!)
I was lucky to not have it bother me while I was on vacation, and I'm glad the stone gravel waited also.
This is everything from the past two weeks.
It is not fun when all THIS decides to come out.

I HOPE this is ALL of it now!!!

That Was (NOT) Fun

I didn't think I'd post...after.
But that went almost as expected.
Uncomfortable, unnatural feeling = YES!
Painful = YES!
Easy = yes.
I pulled it out about 30 minutes ago now.
There was not as much blood as expected.
There was far more stone fragmentation than expected.
The sensation of having to pee has not yet subsided (but I can't get any more out - I think I'm dry now.)
I am still shaking. It is a mixture of pain, adrenaline, and anxiety.
I took a Percocet about 2 hours ago, trying to time it so it would be in its maximum effective zone when it came time for the deed.
I am fighting the urge to take another 10mg!
I now have to follow-up with my doc in 3 hours.
Hoping for encouraging news, but not really expecting it.
I just want to be good enough that I'm not a total loser / Debby Downer if I decided to make the trip to Ocean City, NJ for my birthday.
Oh, yeah, Happy (early) Birthday, ROB!
What a gift!
I am relieved, at least, to not be tethered to a bag any more (well, a piss bag that is), I just need to be sure I keep the portable hospital urinal within reach for the next few hours!
These urges to piss are overwhelming!
I took video, which will probably never see the light of day, but since this will be a once in a lifetime event (at home, alone) I had to memorialize it.
I will probably watch it in the years to come, but for now it'll be locked away.
So, fucking, UNNATURAL!

Biology Is A Cruel Sadist

One thing about male biology is that even if it's painful, it'll keep doing what it normally does.
I thought that having a Foley Catheter in for 6 days is hell enough (I get to yank that fucker out today - in about 2.5 hours!), but I found out that the one thing worse than having a Foley Catheter going up your urethra through your penis is getting an erection while having a Foley Catheter going up your urethra through your penis!
Y E O W C H ! ! ! !
I don't get them during the day (the pain's too great and I don't purposefully go looking for sexy images to get me going, I hardly ever do any more...) but the past two mornings, male biology kicked back in: the phenomenon known as "nocturnal penile tumescence", or more colloquially as the "Morning Wood."
[http://sleepdisorders.about.com/od/sleepandgeneralhealth/f/What-Causes-Morning-Wood-Or-Morning-Erections.htm]
I was woken up by intense, severe pain!
I haven't had *ANY* purposeful stimulation this past week, because I didn't want to risk the inevitable pain that a pulling Foley Catheter would cause.
Now, I'm not big down there, I feel normal (maybe a little smaller looking because of the huge backdrop of - me) but I grow to average length, and a pulling catheter would have some serious pull with the growth.
All this is another reason I hate my penis.
Once again, because of a new pain I've discovered.
You would think that a catheter would account for this male feature, and I'm sure it's supposed to, but unless I'm keeping the tube lubricated with some KY Jelly 24/7, the rubber tube is going to pull.
I am still deciding whether or not to film the removal process.
I don't think I'll post anything after "the pull", because really, I KNOW it's going to be VERY uncomfortable (maybe even very painful), so there's no need to reiterate that here.
I see my Urologist later today @ 2:15pm.
If something unexpected comes out of that meeting, I'll probably rant here (as usual.)

My Saga Continues...

It began Saturday, June 14, 2014 around 4pm.
The pain returns. More kidney stone(s).
So I fight it, hoping the pain will pass but it doesn't, as usual it just grows and grows until I have to admit to myself that I'm too much of a wimp to handle it any more.
I call my folks to ask for the usual ride to the E.R.
Dad picks me up and we get to the E.R. at St. Mary Medical Center around 8pm (I'll just round up/down to keep it simple) and after waiting in the waiting room for an hour I am called back to triage then eventually moved to a gurney in the hallway of the overflowing E.R.
I don't care, I want pain control and then I want to be set free, I don't care if I'm not in a room.
In fact, I thought it might help if I remain in everyone's full view (sometimes they forget us in the rooms - "out of sight, out of mind".)
Eventually they hook up an IV, take some blood for tests, I give a little sample of urine, they swab me for MRSA (Methicillin-resistant Staphylococcus aureus) [http://www.webmd.com/skin-problems-and-treatments/understanding-mrsa-methicillin-resistant-staphylococcus-aureus], then there's more waiting.
Eventually they come an give me some Zofran (for nausea) & Dilaudid (for pain) and it eventually starts working and I start feeling better.
Finally, around 1:00am (Sunday morning) they release me back into the wild with a small prescription for Percocet (enough to last almost 2 whole days!)

So on Monday, June 18, 2014 I call my urologist and get a bigger prescription for Percocet (higher does, which actually works and more pills to last longer - until this stone is out - hopefully!)
All seems okay Monday, Tuesday and Wednesday.
Then, Wednesday, June 20, 2014 in the afternoon, I pass a rather large stone - POP!
I feel a little better but then there's another feeling of another stone about to come and it just stops!
It feels stuck!
Now, I start to get a little graphic (because I sort of have to for you to understand):
I can't pee any more (I just used it all getting the first stone out!) so I drink and drink and drink.
I need pressure - water, after going through you, gives some nice hydraulic pressure!
But after I do my afternoon chores (which were a bit uncomfortable, but not necessarily painful) I come home and drink more.
By 6:00pm I am getting concerned that I haven't passed a single drop of urine in 4 hours.
My back is starting to hurt again.
By 8:00pm I am in agony. I really feel like I have to pee out the Atlantic Ocean but can't get any movement at all! I still feel stuck, but the kidneys (especially the right one) feel like they're "floating."
I've had this sensation before, about 9 years ago - I wound up in ICU for a few days with kidneys that shut down with sepsis!
So I call for another ride to the E.R.
We get there and fortunately I get right in.
AND I even get a private room!
I haven't had CT Scans recently because I've had so many over the years the hospital, me, dad & my doc are all super worried now about how much radiation I've been exposed to over the years and since we most likely know what these attacks are on most occasions, they're really not necessary.
This night is was.
Oh yeah, I forgot the "fun" part - a Foley Catheter [http://en.wikipedia.org/wiki/Foley_catheter] had to be inserted to try to "tap" me to relieve the pressure and prevent the urine from backing up into my kidneys.

They shove that son-of-a-bitch in there and - nothing. Still no urine!
 
So they cart me off to do a CT Scan.
The results are several kidney stones in both ureters (the tubes that run from your kidneys down into your bladder.)
They get the pain somewhat under control.
I am then diagnosed with Renal Failure.
Yup, my kidneys are shutting down. Exactly what I was afraid of.
Eventually my urologist comes and they wheel me off to the O.R. (Operating Room) around 3:00am and while I'm out he goes in and "cleans out" my left ureter (by doing a Cystoscopy) [http://www.webmd.com/a-to-z-guides/cystoscopy-16692], then he puts a stent in my left ureter, then he tries to clear out the right ureter, but he can't get far enough in (blocked), so he puts in a stent in my right ureter! I now have bi-lateral stents! I've never needed two at once before - AGONY!
I am admitted and eventually get a room around 1:00pm on Thursday, June 19, 2014.
I waited around in the post-op recovery room from the end of my surgery (around 5:00-5:30am) until 1:00pm.
At least the Foley Catheter is gone by now!
During my stay my kidney functions start returning and the Creatinine [http://en.wikipedia.org/wiki/Creatinine] levels are going down (a good thing!)
Eventually Friday night comes and my doc visits around 7pm and tells me my levels are going the right way and everything else looks good. He has the O.R. booked for Tuesday to go back in and go all the way up the right ureter to clean it out, but there's no sense in me hanging about the hospital until then, so he discharges me!
YIPPEE!!!
Luckily, my folks were visiting (they walked in the door about the same time as my doc did) so they were going to hang around to take me home.
It took THREE HOURS to actually discharge me!
They gave me a packet of (no shit) 30 pages of reports, tests they ran, follow-up instructions, prescriptions, yada yada yada.
Usually it's only 2-4 pages - today they wanted to give me (and did give me) 30 pages!
Now I know why people sit for hours in the E.R. or recovery rooms waiting for actual rooms, because it takes THREE HOURS to do all the goddamn paperwork!

I ask why it takes so long and they standard response is "There's only one, sometimes two, people doing the discharge paperwork." I say (helpfully?) "Maybe you should have more people doing it?" They tell me "Oh, no, it's not a manpower issue, we just have 1 or 2 people that do it."
(That's the very definition of "manpower issue" isn't it?!)

The nurses are doing their best, they're all amazing people who put up with not only our shit (the patients) but the bureaucratic bullshit too, that then makes them have to lie to patients. I don't fault them one bit.
I am eventually out the door by about 10:00pm.

That brings us to Tuesday, June 24, 2014.
The scheduled procedure day. My father's birthday, no less.
I still have two stents in me, no catheter, and hope to have everything cleared out of me and feeling 100% better by the time I leave Tuesday afternoon. It's supposed to be an "outpatient" procedure, so I am not expecting to stay (and that was my worst fear - HA! THAT was what I was worried about?!)
My surgery is scheduled for Noon, I have to be there by 10:30am. I am there, I get hooked up (IV, gown, fluffy hat, no-slip booties, the works!) and then I wait.
Eventually the O.R. is available around 1:00pm and I go in.
The anesthesiologist promises me "the good stuff" and before I know it I'm waking up in the recovery room around 3:30pm!
That WAS some good stuff!
I wake up to some surprises though.
I have ANOTHER Foley Catheter in me again - and this one I get to wear home!
I supposed I should be happy I'm not staying there for days, but I've never gone home with a Catheter before.
And the best part?
I get to pull it out myself three hours before a follow-up appointment on Friday!
[UPDATE: THEY HAVE NO MORE ROOM FOR AN APPOINTMENT ON FRIDAY - I AM SCHEDULED FOR Y FOLLOW-UP NOW ON MONDAY, JUNE 30, 2014 @ 2:15PM!!! SO I GET THREE EXTRA DAYS WITH A FOLEY CATHETER - YIPPEE!!! (FUCK!)]
That will be - interesting to say the least.
I also still have a stent in my left ureter.
He cleaned out the right and left the stent out, but he wanted to keep the left one in (because there's apparently still chips up in the kidney that he can't reach) and the Foley stays to make sure everything flows (which is counter-intuitive because I feel like I have to pee ALL the time, but I can't do it in the usual way, even though the sensation is so strong that I'm sure I'm going to pee out the side of the tube and all over everything.)
That hasn't happened yet.
I came home VERY depressed yesterday.
I got home around 6:00pm, and then dad had to rush home to take mom to an eye doctor follow-up visit!
What a birthday he had. I'll have to find something good to get him (I haven't really had the time or willpower to go out shopping while all this has been going on.)

I'm not feeling especially better today (Wednesday, June 25, 2014) yet either.
Waking up with a piss bag hanging off the side of your bed yanking on your ding-dong is not the type of sensation I'm used to.
Mom called and as I go into my little office to answer the phone - I step in cold cat vomit.
Perfect.
Nothing ever goes the way I expect.
Life keeps kicking me in the nuts.
I know there are no "reasons", I don't believe in them, Life is just a cruel, random series of unexplained events - it just seems like the more negative ones find me more often than the sweet, kind ones do.

This will be TMI for many people so stop reading now if you want.

Seriously, it might be too much.

So why say it? Here? Because I have to get it out.

I am always very depressed and this subject is just one source of it: my penis is a source of immense pain for me.
I get no joy from it.
It is the outward focal point of all my problems and causes nothing but pain and sadness.
I almost never masturbate because it fucking hurts. (See, TMI!)
I know this is not usual conversation stuff, and I guess that's why it bugs me so much and I felt the need to say it. No one talks about the downside of these things like this.
That's why I'm basically Asexual and have zero drive to find a girlfriend (or anyone, really.)
I guess I can't really say I'm straight, gay or whatever because I have no drive at all for anyone.
I like looking at ladies - a lot, and I have to admit that I am jealous of men who's bodies are not all fucked up like mine is (maybe that's normal) but I really have no desire one way or another for anyone because any feeling is accompanied by physical pain.
I guess I'm now the opposite of Pavlov's Dog.
I can't offer anything to anyone, and I can't even please myself, so it's better to be alone.
In a few days I'll be the one (and probably only) 44 year old virgin.
But alone can get lonely sometimes.
People take a lot of things for granted.
I am thankful for every day I wake up (no matter how hard or painful it might be) and though there have been nearly 20 years of horrific mornings/days/nights, I still hang around because every now and then I see a spark of beauty in the world and even a moment can make me happy for a day.
I hold on because there's so much to look forward to in the future - not necessarily for my own sake, I'm a lost cause I believe, but I have two older, relatively healthy parents (78 years old!), a beautiful sister with a beautiful family that I want to watch grow into beautiful adults and do something wonderful in this world. I do it for them. That's why I wake up. That's what makes it worthwhile.
If I didn't have ALL of that - I wouldn't want to wake up any more.

It's Nearing The End, We're Just Not There Yet

My plan to stop taking Percocet by today has not come to pass (though I am taking less) because I am passing lost of crap left over from when the stent was zipped out of me.
If you've ever made rock candy you have an idea of why there's so much "debris" left in there. It was gathering on the outside of the "loops" on either end of the stent (to keep it anchored in the kidney & bladder) - I saw it when the doc ripped it out of me.
Dad always thought the stent was just a little tiny thing with a string on it hanging out in my bladder, I asked the doc to show my Dad (calling him back into the room when it was out - I didn't want him to witness the actual event) and as I thought he was surprised by how long a stent actually is.
There was stone debris all over each end, so I knew right then that I'd be passing stuff, but I thought it would only be for a day, maybe two, but now we're 3 days out and it's still pouring out of me.

Most of it is hardly noticeable, but there have been two "chips" that have left a lasting impression of their escape.

Hopefully today is it and I have taken my last Perc, but as long as this crap keeps coming (especially the bigger "chips") I'm glad I still have some around, but it's eating into my stock in case of my next stone(s).

My Offspring

This is my latest batch of wiener diamonds.

You can see one, solid one. This is most likely the 1cm stone that was in my right kidney a couple of weeks ago. I'd really love to know how there's so much crap STILL coming out of me! It will end, right?

My Stone Age

Last night I passed a HUGE collection of pebbles, shards & gravel.
It was really bugging me for a few days and I was really nauseous yesterday but my temperature never went above 97.3* (normal for me) so I wasn't worried about infection.
I am on Bactrim (anti-biotic) for possible infection anyway but it is a serious concern after someone probes your body with a camera/laser/tubule!

Anyway, here's my haul from ONE "burst"!

There's still more floating around in there (I can feel the pieces getting caught on the string/stent inside my bladder) although the nausea is somewhat better since all that crap last night released.
I'm hoping more comes out (I mean, that is the ultimate purpose for the stent being in there in the first place!) but I also really hope I'm nearly done!!
Thank goodness for a longer weekend.
All these meds are making me sleepy and I've napped so much I have a "sleep headache" (on top of my medication headache.)
Have I ever mentioned how much being sick SUCKS big floppy donkey dick?!?

Itchy And Scratchy

My butt & nuts have been super itchy ever since I got home from my Ureteroscopy on Tuesday.
I can't stop scratching and it feels SOOOOOO good when I do.
There's no sexual pleasure from it, just "Aaahhh that feels soooo good!"
I guess that's okay (it evens out) since when I pee it's still feels like I'm pissing out molten magma (and will be as long as the stent stays in) and god forbid I should need to "adjust" myself (under my clothes) because that damned string hanging out of me is sure to get caught and pulled with the adjustment movement and cause an instant shot of pain overload (it's already happened about a dozen times!)

I Struck It Rich!

I spent all night working on my newest wiener diamonds:

If only they were actually worth anything like real diamonds...

Feeling My Age

As I get older my veins fight the phlebotomist more and more.
Some days I have good veins and some days they're bad.
Yesterday was a bad day, they just didn't want to let the needles in.
It took 3 attempts to get a good "stick" to get the IV flowing into me. Thankfully, once they get the IV flowing, the drugs follow shortly thereafter so it's not so bad, but the next week I have the evidence of the attempts.
I don't heal as well as I used to either.

It Goes On And On And On....

A collection of last night's & this morning's efforts.
You can see the huge sharp piece, that's apparently one side of "The Big One" (the 1.7cm stone) that was broken up by yesterday's ESWL.
Glad at least these buggers are out, but there's definitely more in there (and hopefully I can get most out today), but whatever decides to stay inside will be evicted on Tuesday, February 11 with the Ureteroscopy at St. Mary's.

A New Year Arrives

It's been four plus years since the last post, and not much has changed.

From now on any medical updates, good or bad, I will post here instead of Facebook.
Just to get back into the swing of things, I'll talk about what happened today:
I just got home after undergoing an "E.S.W.L." (Extracorporeal Shock Wave Lithotripsy) [http://www.webmd.com/kidney-stones/extracorporeal-shock-wave-lithotripsy-eswl-for-kidney-stones] procedure for a 1.7cm kidney stone in my left kidney.
It seemed to go well, I am feeling less of a "poke" in my left kidney, though it could be because of the pain cocktail they use with the anesthesia.
They said I could eat & drink normally now (in fact, I should drink more to help "flush" the stones out of the kidney and to make sure everything still runs!)
I can also take Percocet as needed again (so I took a 10mg pill once I got home as I was feeling the sharp pains returning.)
I passed a l lot of gravel and a nice big chip (!) in my first attempt.
Still a little nauseous so I'll probably keep it to toast or maybe some soup later.
I have an upcoming procedure next Tuesday, February 11th, called a "
Ureteroscopy" [http://www.webmd.com/kidney-stones/ureteroscopy-16859] where the doc will go in with a laser scope and "scrape" any bits & pieces he encounters in my left & right ureters and he'll go all the way up to the kidneys to try to clean them out too.
Hopefully this will not require the insertion of a stent [http://en.wikipedia.org/wiki/Ureteric_stent]. I hate stents. My doc knows I hate stents. So he'll only put one in if after he cleans everything out he thinks I need one to help keep the ureter open to help flush it out.
I have to go for Pre-Admission Testing (hereafter referred to as P.A.T.) on Friday for Tuesday's procedure.
So, yeah, being sick keeps you almost as busy as if I was working an actual job.
I will also occasionally post pictures of my wiener diamonds here (thanks to Frank from "Raising Hope" for giving me a nicer name for these horrific monsters!)
I will post today's "big chip" later, I don't feel like getting dressed and trudging out to my car to get my camera right now.